Rare are the men willing to share their voices in this field, but the struggle is no less real for them, and the stigma of male infertility can be as equally difficult as it is for women. We bring together a panel of two men who share their struggle, along with 3 fertility specialists in honor of men's health month and the opening of the Art of Infertility at Venice Arts in Los Angeles. Recorded live on June 9th, 2018. 

What if the stigma around infertility, and women's health in general, is in the word infertility itself? Where did it come from and how do we try to change the narrative when what's written in medical textbooks could be biased against the patients themselves? Dr. Robin E Jensen talks about her book "Infertility: Tracing the History of a Transformative Term," and how we went from barren to sterile to infertile, and maybe where we go next. 

Dr. Jensen's book "Infertility: Tracing the History of a Tranformative Term" is available wherever books are sold. 

Transcript

(transcripts are for purposes of searching and are approximations at best)

It was around this time last year that i started taking the concept of infertility awareness to heart and started this podcast to help shine a light on the struggles that i'd seen my patients endure once i put it out in the world, i began to find there are a lot of others doing the same and what has been a silent struggle for so long is becoming less so and that's a wonderful thing thing the last full week of april is national infertility awareness week and over the last year it appears the world is becoming a lot more aware of those who've tried to conceive a child but find they cannot the media is alive with story he's gabrielle union discussed how she's almost lost count of the eight or nine miscarriages she had documentaries like one more shot and vegas baby are giving you a direct view into couples lives as they struggle the show friends from college on netflix had an entire episode showing the ardor and craziness of ivf injections even the upright citizens brigade introduced a taste of improv comedy into their struggle and it's marvelous this year's theme for national infertility awareness week has flipped the script and it couldn't come at a better time never before have women's voice has been so amplified to bring about change in how they're treated and perceived but how do we flip the script ? There's more and more evidence that women's complaints especially of physical and mental symptoms are more often ignored and given less weight than that of men and too often the advice that they're given can be downright patronizing just look at serena williams who had to beg her doctors to pay attention during childbirth that she thought something was wrong all because they thought she was just quote unquote confused thinking about all of this made me wonder if there's something inherent and how we talk about medicine particularly infertility that could be the problem i'm not just talking about our conversations but the actual individual words we use this made me question where even the word we use now infertility comes from and that led me to today's interview in march i had the pleasure of being on a panel with dr robin jensen who in two thousand sixteen wrote a book called infertility tracing the history of a transformative term and i think it's exactly this history that could hold one of the keys to how we flipped the script on infertility way this's waiting for babies i'm steven mavros today's interview is about the words we use around infertility throughout history and who better to talk to than the one who wrote the book on it i'm robin jensen i'm a professor at the university of utah and the department of communication and i study reproductive health and rhetorical history largely so how we talk about different subjects over different periods of time and then how that affects how we talk about the thing in the present day dr jensen specialty is in rhetoric which is basically how we use words to be persuasive so how does one get into the study of rhetoric you ask yeah so when i was in college i was on a speech team where we did basically right speeches and you compete with other people who give speeches on dh i just loved it and in that process i started to learn about rhetoric and what that largely means is how people persuade each other how they use language tio our various symbols to convince other people tio you know agree with them or bone in their direction or that kind of thing on dh that really appealed to me i was just really interested in and how you speak to people in ways that are persuasive or not and how that came then affect people lived experience on dso after college i went to grad school and found out that you know, a lot of people study this and i could you know i could explore how people are talking and why or why not that's effective and that's really what i've what i've been doing ever since and what you're you to the reproductive world. I know you did a lot of work and sexual education. And, like, what ? What got you into that, that particular subset of it. So i'm interested in women and women's history. And it turns out that a lot of with history has to do with reproductive health. And so, you know, i started looking at how people talk about, you know, sex, education and how we can encourage people and let people know about. You know their bodies and how and what resources they have available to them and how they learned about what is possible and what's not and in that process infertility became really, really central because it's not something that we talk about in sex education and it seems like something that we should be discussing in terms of, you know, helping people understand what fertility is when it might happen, how it happens, andi kind of what they can expect from ah broader fertility timeline, it seems to me that that's something that we should be teaching young people so that they just have a sense of what that is, so we don't get to the point where people are all of a sudden trying to have a family and they've never thought about fertility before and they've never thought about, you know, the potential hardships there or the choices they have to make in terms of win and how and what and and that affects women's lives in a very real way and men's lives as well in terms of their professional outlook in terms of you know, the possibilities they have to them in terms of education in terms of making choices about what their life will look like in infertility tracing the history of a transformative term, dr jensen tried to go back to see how our society talked about the inability to conceive so i went as far back as i could, and i only speak english. Sadly, so i couldn't ah look into some of the really far back sources. But, you know, around in the sixteen hundreds, people people were using the term barron on. There was a real understanding that women, and it was always about women. And often that is the case in our historical narrative, that women are connected to the earth and their natural and their bodies are soil on dh. There was a real organic metaphor of, you know, being fertile, which is ultimately where that fertility metaphor comes. Four comes from that. But to talk about women as barron is really connecting them. Tio nature in a way that it doesn't connect men a lot of times that aligned, actually, with a religious outlook that if you were, quote unquote there and you were somehow and not in god's favor in that god would grant the blessing of children and allow youto be fruitful and multiply. If you did the things that we're in line with godliness or morality and so women who found themselves it barren we're often their main recourse was tio pray or teo you know try and make themselves right with god towards the mid eighteen hundreds medicalization began to happen births went from being at home with the midwife to being in the hospital with a physician suddenly baroness became a medical problem that could be fixed with interventions like surgery and people like j marion sin early gynecologist started operating on women and trying tio appease or fix their reproductive problems via operation and that really became a medicalized issue on dh then you start seeing baroness being called sterility and surreality was treated in a hospital with something that the doctor could and it was always he could go in and sort of open a woman up and try to fix what was in there closer up and then she would magically have you know the powers of of bearing children and it didn't always work out that way. In fact, the the record shows that this the rates of success for j marion simms is interventions were really low but people started talking about sterility as an issue that could could be treated in the in the hospital by a surgeon and that that was the main way that that people could overcome that kind of issue even though it wasn't actually all that true i guess the interesting change there is that to an extent suddenly it's no longer the woman's fault and it has now become something that can be fixed and it's something physiological yeah, that's really interesting because aa lot of times we think about medicalization as something that takes, you know, takes agency away from individuals, so we're not we're not able if this is the model there's, nothing really that we on our own khun dio toe alter our health outcome, but if we go into a doctor or surgeon, they will take care of it, and so we don't have as much agency, but the sort of the great thing about that is that women were being blamed as much for their lack of children because the understanding wass you know, whatever it is, you can go in and get it fixed and you can't really do anything about it it's the doctor, the surgeon who can intervene. And so there was ah bit of relief i would imagine and that it wasn't like, well, you can appeal to god and eventually hope that you'll be in his good graces and be blessed with the child. This is more of the story of yeah, you just this stuff happens and we're going to try and take care of it by cutting you open and seeing what's wrong in there now, just in case you thought this medicalization was a good turn for the field of sterility, as it was known at the time, we should put this surgical intervention in context for women. This may have taken away some of the blame placed upon them, but absolutely gave them no agency to be anything other than guinea pigs to a mad scientist. Also, this was the mid eighteen hundreds, so instead of doing testing on animals or on cadavers, sims did it on people who had no choice. He operated on slave women primarily to begin to try to figure out and experiments essentially, with his surgeries, he didn't use anesthesia. Of course he didn't have consent. Um, and these were just brutal surgeries. Sometimes he would operate up to seventy times on an individual woman, which is just the worst possible. I mean, i can't even fathom what that experience was like, so he first did these experiments on slave women, and then he moved into the public sector and charged inordinate amount of money in many cases for women bite women who could pay on, and he used anesthesia on them that had pretty low success rates because that he was essentially doing is trying to see pretty dark times indeed, with the turn of the twentieth century. Thankfully, things start to change, and science discovers chemistry and the concept of hormones pressed innately the nineteen thirties. There is what might be called a rise of of of reproductive endocrinology, where you have doctors who are realizing and and surgeons and various kinds of scientific clinicians are realizing that something that comes to be called hormones is involved in the reproductive process. And they really start studying that process and realizing that both men and women have hormonal. Ah, you know, hormonal compositions that must be correct in order for, you know, conception, pregnancy, childbirth to take place. And so you have women and men coming in to try to be tested and treated, often with hormones, usually not with the surgical interventions that had been so prevalent with j marion simms. And then we're finally included in a really substantive way where they were going in and sort of getting their hormones tested. And, you know, it wasn't a mass migration. Some of them were unwilling to do this, but but they were considered sort of the equation of of sterility ah and what was coming to be known as fertility and infertility in a way that they haven't in the past so so women were not necessarily seen during this era as the onus of conception in the way that they had been in the past do you know off the top here ahead when like infertility or fertility was first coined or when that phrase was first used yes so there is ah doctor named his last name is duncan and he first used the term in the late eighteen hundreds but it really didn't get taken up until the early nineteen hundreds and even then it was fertility that was used and not infertility you start seeing the inverse of fertility mohr toward the second half of the twentieth century so it really didn't it's a relatively new term that people are talking about infertility until that time they're talking largely about sterility and not today we we think of stability often is just referring to men but stability was really across the board and then we started making the switch now while this veranda understanding chemistry is going on another concept is a rising about women specifically i feel like it's best summarized by this quote that dr jensen includes in her book and it's written by journalist halina huntington smith in nineteen thirty four for parents magazine it says quote, there is an unmistakable connexion between the stress of modern living and sterility the women of today who tries to expand her energies to include a great many other things besides home and children is under a nervous strain unknown to her grandmother and quote which struck me about this is how it's still echoes to today so that's that's in there and if that goes back to the early nineteen hundreds and probably late eighteen hundreds and it's called the narrative of energy conservation and it it emerges from theories of evolution and social darwinism and from herbert spencer and various other philosophers who argued that humans are fixed energy systems meaning that we don't acquire energy we just have a set amount and we can use it in whatever way we see fit for women this was conceptualized as ok you have a set amount of energy you can use it either for your brain or for your reproductive organs and so if you are using your brain too much that's fine but the output will be that you you will not be able to have children or you will have other reproductive problems because you used your energy you misused your energy and ultimately that theory has was proven false relatively early on but the thing that is it's important to note is that the narrative of energy conservation even persists today wherein people will say you know you're working too hard maybe you need toe give up your professional life for your education and and then you know your body will figure out what it needs to dio whereas you know you never see that kind of narrative for men if they're having fertility problems there hardship you know, say well, you know the answer is you've got to quit your job or you're getting too much education there's really an understanding that women have a fixed set of energy and that if they are not if they're having reproductive problems because they've just used their brain too much and all the energy has gone there so here's a theory from the nineteen thirties about energy conservation and a few question whether it's still persist today in two thousand eighteen where we have a hyper scientific fertility field where we have this amazing ability to do things like pre implantation genetic testing i give you this one example bed rest anyone who's been through ivf knows all about that rest the majority of fertility clinics in the united states on their discharge papers for women who've been through an embryo transfer fresh or frozen is the recommendation of around twenty four hours of bed rest sometimes it's a cz muchas seventy two hours often it's combined with the instruction to not lift anything over ten pounds for years i took this as established science. Then i started doing research. I looked for the studies that broke out women lifting three pounds versus ten pounds versus twenty pounds and who had more success women who just went toe you know go on with their normal lives after transfer as opposed to those that had their feet up on the couch for a week you know what i found nothing i couldn't find a single study that in any way shows that bed rest or minimal lifting changes someone's outcomes of success during ivf there was even one study those small that showed the opposite i happily challenge anyone out there docks nurses anyone who's in the reproductive endocrinology field please prove me wrong and i will get down off this soapbox because then i'll have a lot more respect for how this field treats its patients send me a study or even a strong siri's of case studies showing that this instruction we give women is in any way based in science otherwise it sounds to me like every reproductive endocrinologist this country is still following the law of energy conservation from the turn of the century that seemingly only exists in women not men i'm pretty sure we've disproven and to me sounds like the most patronizing and intensely demeaning crap i've ever heard okay now that my first ranches over let's get back to the mid twentieth century and the post war era around this time we saw the rise of psycho analysis and it definitely hit the fertility world aa lot of us have heard about freud. Not many of us have heard about helene deutsch, who was a freudian students and became a cycle analyst in the united states. She moved from europe, and she really took on the female side of psycho analysis. You see, freud thought that the male psyche was the norm, while deutsche thought that women have their own unique psychology. But then she also concluded in line with freud that women really needed to align with, uh, feminine pursuits and ideas, and you know, if they didn't do that, they were, they were psychologically abnormal and then would be blocked in their ability to do their female specific quote unquote duties. What her advice usually wass, is that they would do things like again not pursue higher education, stay out of the workplace, be a feminine as possible. One of those other ideas was to adopt, because if you adopt a child, your maternal instincts and processes would be unblocked, and then you would i have a child of your own, you could see the traveled on your own because those you had become more feminine and more quote unquote normal. And that is where the adoption this comes from, its still in this today, that if you adopt the child you are, then we're likely to conceive a child of your own on dh. There have been numerous scientific studies on this to show that, in fact, the race, they're exactly the same. But you had a lot of adoptions happening around this time in the mid twentieth century, with the idea that that would then ignites a woman's own normal psychology and then allow her to consume well. As far as i can tell, this is a myth that was disproved in studies before i was even born. There was even one in nineteen seventy nine that almost showed the opposite, that people who adopted were less likely to get pregnant. But this was deemed insignificant, a difference at the time. Yet i can't tell you how many parties and meetings i've been to, where someone will find out i work in the infertility world, old and say to me, i mean, it must all be stress, right ? Look at all those people who get pregnant after they adopt. You can't see it, but even just talking about it. I'm rolling my eyes, but wait. In case you thought that's, where the patronizing ends, it gets even worse. One. Of the ideas wass if you were ah, person who had had miscarriages, or even if you are a person who had morning sickness or nausea in early or at any point in the pregnancy, the argument was that your body was rejecting the pregnancy, that you had too much of a masculine outlook on life, and so your body was trying to reject motherhood, and so if you had miscarriages, it was called an abortion neuroses, because your body was ejecting the fetus and rejecting it, and it was it was your psychology that was doing that. And if you were having, um, you know, if you were having vomiting or you are having any kind of nausea and pregnancy, that was also the idea was that it was it was because you didn't really want a baby, that you're psychology was maybe we're telling people he wanted a baby, maybe even i thought you wanted a baby, but your body was rejecting it on dh. So if you could just imagine the kind of blame and and the horrible feelings that you would have if that's what you're your physician or the people around you were telling it when you were having those experiences it's just it's a really sort of a horror to think about that history. Now, as we get closer to modern times in the nineteen eighties, came the concept of the biological clock. It was exacerbated by a french study published in the new england journal of medicine. That said, fertility declined sharply after age thirty. Now, even though this study was quickly refuted suddenly, timing of every part of a woman's life became yet one more thing. She had to control for, manage and succeed at the discourse of fertility really become this kind of dissed discipline discourse of timing yourself and by yourself always the woman who is doing that timing because it's her body on dh it's the male body too, but sort of the argument is, you know, he's not going through a cycle, he just has to do his role at the appropriate time on dh so the woman becomes inherently, you know, just really focused in on timing all these processes correctly and then doing it within the life cycle at the right time on dh the downside of that, i think for a lot of people is that it's very difficult to live a full life while you are trying tio time these bodily processes just so, and you are going to monitor your body on a day to day basis to make this happen, and if it doesn't happen it, you know, there's always the implication that you're doing it wrong, that you're not strict enough for or your body is wrong or, you know, and that's a really, really difficult place toe exist, and people exist in that place for long periods of time and and it's really devastating on a number of levels, so we're giving them agency, but at the same time by giving them that agency, we give them a point of failure, right ? And there's been the argument that this creates something called it a fertility mandates where you can never stop once you get into sort of the technological interventions stage of fertility until you conceive and birds that biological child it's really there's a sort of a compelling, uh, pores that derive you to keep going no matter the cost to your body, to your financial situation, to your partner, to your relationship, to all of these other things, beyond the point where it's healthy for you to do that. So now here we are in two thousand eighteen one of the most poignant examples of how rhetoric affects us and in the world of infertility women especially isn't how medical conditions are named in textbooks and taught to medical students. One of my favorites is the i think you brought this up in your book, too. Is this this juxtaposition between what happens when essentially the a flap that comes from the reproductive organ fails ? And in a woman it's called an incompetent service cervix and in a man it's like retrograde ejaculation like you you for you don't talk about the incompetence likes think to reflect that's happening ? No, no yeah, and those are those air, discursive rhetorical choices that have been made and that we keep reiterating i mean, i can't believe we still use these terms incompetent cervix, but that is the medical term on dh there are a bunch of other sort of similar terms that persist in the medical terminology, and that then we use on a day to day basis and it's really hard, not tio sort of garner a sense of the moral judgment that seems to be happening for something that people have absolutely no control over. I want to give two more examples of this. If a woman is no longer producing eggs when they should be, we call it premature ovarian failure. Note the word failure known men we call it a zoo spur mia, which basically just means an absence of sperm. We don't say testicular failure or vas deferens failure, we don't say ejaculate torrey failure now, for some reason, sperm can appropriately flow through the cervical mucus into the uterus or found to not survive within the cervical fluid. The medical term for that is either hostile cervical mucus or the uterus itself is hostile. We don't call this berm weak or dainty or crappy swimmers, we attribute the foul to the woman and call them hostile are you sensing a pattern here ? Okay, back to dr jensen on the men's side of things i don't think what we want to do is then give similar terms to male male processes that we can for sure stop using these really odd medical terms that place blame on women's body is there as part of what you do in your profession do you feel like there's a an easy path forward to start that change ? There are some people who are doing advocacy work to try and alter and view more aware of that language i don't know that there's an easy path to change if there was i would march up to the medical school on my campus and say ok we're not using this anymore stop but i don't you know that's not how it works in some way we have to kill infiltrate the's technical fears of discourse and i think what half and what i mean by that is a lot of times it is medical education that's really the spot where people are learning these terms without sort of critical analysis and then perpetuating them in the exam rooms and then from there they get circulated on a day to day basis by people who encounter them who are not doctor than clinician so if we could create sort of medical training medical education that is thoughtful and reflective of these terms i think things would change and that's probably where i would identify the most impact in terms of moving forward with that specific issue yeah, one of the interesting terms that you use throughout the book. And i was curious if this was your kind of pushing us into the next word or phrase that we use was involuntary childlessness. Is that something you specifically are pushing is, like the next word for infertility ? Or, or was it just a good way of phrasing ? What you were going for you ? Know, i think others have introduced that term as an alternative in a lot of ways. It's more descriptive in it. And it gets that the situation better than infertility. But it's a mouthful. So i don't know, you know, it's hard to say, involuntary childlessness, people, i in a lot of ways i think that communicates that, you know, people are childless, but they don't want to be without getting into, you know, the morality issues or some of the blame. That's placed thea the label infertility. I don't know that it's necessarily better or worse, but it's certainly an alternative. Andi, i think the more alternative we have, the better certainly bearing this is awful. I think that term could we can all agree that's not a great term. Stability is, has a lot of sort of negative associations and infertility. You know, i think some people maybe are fine with that term, but it's another option. And i think if we can keep coming up with ideas and ways to describe people's experiences, we provide more options for them and more ways of imagining themselves in the process of putting their families and their lives together in ways that make them feel, you know, not at fault, which is really important. For the last few months, there's been a tremendous amount of research showing how bad maternal outcomes are for women of color. When you look back at the experiences of serena williams after her birth, it's no surprise that the maternal mortality rate of black women is significantly higher than white women. Now, i'm not just talking about ten or twenty percent black women who have complications during pregnancy or delivery, or two to three times more likely to die than white women who suffer from the same conditions two to three times its also no wonder that the concept and rhetoric of infertility around minorities would also be different, and possibly be one of the causes of this disparity. You know the history of infertility is really different for for instance minority women african there can women in particular because you know, one of the arguments has long been that african american women and and women minority women are closer to nature and therefore don't have any problem bearing children in fact are hyper fertile and when they had when they go into childbirth that hurt them less because they're closer to nature and it's easier for them to do these kind of biological processes none of this is true of course and in fact our highest rates of infertility among populations today are among minority women what that means for women minority women in a really lived uh embodied way is that it's really difficult for them to think of getting any kind of intervention having to do with fertility because they don't think of themselves as the person who would be infertile and their families don't think of that either on and then doctors and providers don't take women who are minority seriously on dh for low income women course there are you know they don't have access to the health care that a lot of little upper middle to upper class people have and and of course there's also the history of african american women and i talked about j marion sins and he was you know, doing his fertility experiments essentially on women who had no choice in the matter and so there's also a distrust of the medical establishment, and and rightly so, in that, you know, there have been situations where minority women have been mistreated and the other side of things. We also have a history in this country of, of sterilizing african american women without their knowledge, particularly low income african american women. So so that's, a really important story that needs to be black out and told in the future there's. One more word that i want to come back to that dr jensen keyed in on during our conversation that i think is crucial to put in context. That's the word choice. If you ask any behavioral economist about the concept or architecture of choice, choices are never made in a bubble. They're not objective. They're not infinite. Decisions are made, and often those decisions air skewed based on how choices air presented to us. This comes right back to infertility and, of course, specifically for women into what choices they really have about living their lives and planning a family and the interesting thing about the choice terminology is that you know in what respect is that also blame oriented like i would choose to have a child at a certain point in my life but we all know that that's not necessarily how things happen right pregnancies happen or don't happen maybe you need a life partner maybe you don't maybe you have a professional opportunity at a certain point and that set things up and are those choices well in some respects but in others they're structurally sort of set out for you and so to say that women chose i mean one of the narratives that here all the time is like well that professional woman waited too long she's going to wait too long and then that's just you know it's her fault she should have worked at finding a husband and rick and you know, creating a family early on whereas you just don't get that narrative with men if there was a recent study that came out that i was reading it talked about how women who have babies between the ages of late twenties and mid thirties it's it's impossible for that is all statistically there they end up always making less money than their husbands for the rest of their lives there's like a sort of a child bearing tax in that way they just don't make up the wages that they lost during that time, whereas women who have children earlier than that or later, will eventually make up the deficit that they have with their partners, or with their male counter point. But what you see there is that there are really clear economic hardship that women are having to navigate on dh, those air directly connected to win, and how and why they have children. And so, you know, what we see there is that this narrative that it's a woman's fault is really doesn't attend to these kind of structural differences that she's trying to navigate there's, not a clear way through there's, not a right way to do it. Are there ? Are there any other things that prompted the book and that where you want to go from here afterwards ? Now, now that you've been kind of talking about this, yeah, yeah. So, uh, in the future, i'm planning. A number of different research projects, one of which is, you know, interviewing current fertility patients and talking to them about the discourse is that they've encountered it sounds like you have a lot of experience on that front, so maybe we'll have to talk more on dh. I'm also doing a historical project on some of the, uh, the women who have been central to shaping the field of fertility studies, so i mentioned a little bit in the book sofia, click men on dh, helly, deutsche and a few others, but i really didn't get into as much the sort of fights and the ways in which they had to insert themselves on dh, how they've been were able to change the discourse is of fertility, for better or for worse, but often for better to try and offer mohr agency for women and the inclusion of men and different ways of thinking about about reproductive health. And so one of my arguments is that, you know, we talk about things in ways that are productive because people have tried to break up the discourses that are harmful in the past on dh so what did they do ? How did they try to do that ? And and what can we garner from that as ? We move forward a big thank you to dr robin jensen for sharing her amazing research and passion for this field we have a link to her book infertility tracing the history of a transformative term on our website if you want to read more there's a ton of interesting stories and theories in the book that we didn't get a chance to touch on here as we come to the end of infertility awareness week i encourage everyone who's listening to get involved in this conversation if the words and medical terms we use are part of where stigma lies it's time we fight to change them now aside from this episode i put a few thoughts about how we can flip the script on our website at waiting for babies dot com another big day in the fertility world is coming up soon and that's advocacy day where people who've struggled with infertility and work in the fertility field come together and converge on washington dc to have their voices heard and promote legislation to reduce stigma and increase access to care for anyone wanting to bring a child into their lives if you'd like to attend and get involved we have a link on our website we're going to resolve dot org's i'll be there and would love to meet listeners and storm the halls of congress together with you till then thanks for listening i'm steven mavros see you next time

This audio features songs by Quiet Music for Tiny Robots, Chris Zabriskie, and Podington Bear, all available under a Creative Commons Attribution license.

Infertility is depressing, even if depression isn't something you've experienced before. The whole process of infertility treatments, between the medications and the procedures, can often make it worse. On rare occasions, it can even quite literally take someone to the edge.  And it nearly did…

If you're an english professor, as well as an author, poet, yoga teacher and playwright, what do you do after struggling with infertility?  Why, you turn it into a play of course!  When Lisa Grunberger heard the ART of Infertility was organizing an art exhibit in Philadelphia, she quickly adapted a book she had written into a screenplay, hired a director and cast, and in a few months put together a performance piece to bring a vision of what her and many other women go through to life. 

For tickets to see the play in Philadelphia on November 15th or 25th, click here to go to the Eventbrite page for the event. 

Programming for Cradling Creativity also includes:

• November 18 - Private screening and Skype Q&A session of the film, One More Shot, from 8:00 pm - 11:00 pm at Old City Jewish Arts Center. Created by Noah Moskin and Maya Grobel Moskin, One More Shot follows the struggles they encountered when trying to have a baby. The Moskins explain, “Though we are both in our early 30’s and in good health, we have had to begin a quest to build our family through alternative means and medical intervention as we try to find our own personal answer to the age-old question ‘Where do babies come from?’ We expose the relational impact infertility has on a couple and a family in a raw and honest way.” Tickets available at http://bit.ly/OneMoreShotPhilly. The film will also be available on online outlets on November 4th and pre-order for iTunes begins October 25. Learn more at the One More Shot website.
• December 1 - Barren Conceptions: Pondering Intersections of Religion, Medicine & IF, Temple University 10:00 am - 12:00 pm. What role ought religion and medicine -- the clergy and doctors in particular – play in helping women make informed decisions about having babies? How are Jews, Catholics and Protestants thinking about fertility and the use of biotechnologies like IVF, to make babies? How are future OB-GYNs being trained in medical schools today to become more knowledgeable about infertility and to ask women difficult questions about family planning? Please join us for this informal reflection of these and other critical questions. This event is free and open to the public. Tickets are available at http://bit.ly/BarrenConceptions

This audio features the songs "Not on the Bus" & "Walk That Dog" by US Army Blues, all available under a Creative Commons Attribution license.

Transcript

Great so we are rehearsing right now for my play Almost Pregnant.

That was Lisa Gruttenberg. Lisa is an associate professor of English at Temple University as well as an author a poet a yoga teacher a playwright and most relevant here.

A self-proclaimed infertility survivor … play almost pregnant which is about infertility. It's about IVF. It's about motherhood and wanting to be a mother. And in all the trials and tribulations that many people not just you know women with older. this is waiting for babies.

And I'm Steven Mavros. If you've listened to the last few episodes you know that in Philadelphia right now is the art exhibition cradling creativity part of the art of infertility. Aside from the artwork itself we have a lot of programming going on including a yoga and writing workshop a film screening of the movie one more shot a speaking panel on the intersection of religion and infertility. And of course Lisa's production of her play almost pregnant. I got to sit down with Lisa and talk about where the idea for this play came from what her journey was like. And then after We're going to get a sneak preview of the play itself while it's in rehearsal.

Tell me if you can give me like a quick overview of like what the plot is. Without giving away too much I can't Sure.

So Becca is a fortysomething woman who like the way the Lichtenstein a cartoon.

Oops I forgot to have kids. That's sort of hovering over her head like she was a writer and a professor and a yoga teacher. And oops I forgot to have kids Roy Lichtenstein. And. And she's faced with infertility. And she and her husband go through many clinics in New Jersey in Pennsylvania in Colorado and and it gets it the stakes are higher and higher because it costs more and more money as the years go by and really in 17 minutes we take her through seven years of her struggle through many miscarriages ectopic pregnancy has her own internal

machinations and tensions and struggles that infertile women go through.

Should I go on should I not go on. But simultaneously she's dealing with questions of identity because I don't want to give away too much. But she's adopted. And so she's wondering who is my Bolla biological mother.

Where do I come from and what am I creating and why do I even want a baby at a certain point. You get so frustrated. Is it just IVF I want to triumph over or you know what battle and my fighting. And of course we don't get into tensions between her and her husband but IVF in the play that ended up on the cutting room floor but that was a big part of it. But in the play itself they're a team. But there's another whole story there where IVF can really be very very very divisive in a marriage.

Is there a reason there's no partner in the play.

There's no part there's no character of the husband in the play and there's not really a reason for that leg.

It's really about her internal struggles and through the characters of estrogen and lucky her really fighting her own demons. It's really a kind of character study of her and her dealing with the kind of cold clinical bureaucracy. But this pretty hot as hamotzi director said in theater as in a good poem you have to tell one story was this coming from a place of experience was this autobiographical or is this something that.

You just came up with. Right. So I didn't just come up with it.

I did go through some infertility treatments and I vowed when I started to talk in the waiting room is a very strange space when you're going through infertility because everybody is very quiet and very uptight. And God forbid somebody brings their children into the room. Everybody's giving them like dirty looks like how could you have children and not me. And I'm a writer. I have done one play before in New York City. But mostly I'm. I'm a poet and essayist and a humorist and I vowed that whatever happened to me during my treatment that I would write about it somehow. And I thought I would do a kind of Vagina Monologue for infertility. And so that's how it

started. And then it more. So it's not it's not completely autobiographical.

To answer your question it morphed into a nonfiction book called the A the A B C's of infertility a quirky primer. So I would do like a through Z and I had that and then I Googled one day the art of infertility. So when I found out they were coming to Philadelphia with their traveling art exhibit I said I know exactly what I want to contribute. I want to turn my primer nonfiction book into a play and hence almost pregnant was born.

Tell me about the nonfiction book that was give me for example what like if you remember right up here.

Oh God. That's good. I don't remember D. God can be diva. No. It was quirky. There was Barbara B for Barbara for some reason Barbara Streisand and I had a whole little shtick with Barbra Streisand.

Oh I wish I had it with me and it was a little snarky in its tone and fun. And we retain some of that. The main character Becca in almost pregnant is a bit snarky and frustrated. She does have I had a dream one night while I was writing it and I thought waiting room waiting and waiting for Godot came to me and I started reading Waiting for Godot.

And who are the names of the puppets not the puppets the characters estrogen and lucky. And I thought estrogen that's the female hormone This is best shared by shared is like a Yiddish word for men to be and I and lucky you have to be lucky with IVF.

You know because the success rates are not great you know. So I said to my director. I said we have two more people it's not a one woman show we have two more characters they're puppets. And then she read it and she said I think the puppets have just became people. So now we have three people in the show. And they're the puppet characters estrogen and Lucky who are actual characters are like the alter egos of Becca like you go through all these psychological machinations. Should I do another cycle. Should I stop. Should we just have a nice life without children. Why do I want children. Why this desire. You really turn

yourself inside out psychologically. When you go through infertility so the puppets provide comic relief.

They're also her the character who says no stop there your internal mind manifested on the stage and then the director has done amazing really wonderful things in interpreting the script that I wrote and injecting a little humor into it in what is otherwise a very very can be a very tragic ending to many IVF stories.

What made Uplay be the medium you decided to do. Right.

So after I wrote the book and I had sent it out to some literary agents in New York one of the agents actually wrote back to me in New York agent is like I love it but I'm not going to buy it. But p.s. it really reads like a play. The book and she just gave me the idea and I've all I'm a writer and I love theater and I always wanted to do some kind of a play about IVF anyway but I had written the book. You never know what genre things are going to come out. But the play was originally like 125 pages which would have left people in the theater for four hours you could have had a baby during the play during intermission. And so my director had two very harshly say

I'm going to be very tough with you. I said OK. And she said we have to cut about a good half of it.

And so that's been the process of editing and cutting and I was surprisingly very amenable to that. So we have a shorter play that's about 70 minutes with wonderful music a Temple University student is a jazz improv improvisation old jazz player in the violin. So we have a violin player who plays a kind of god muse like character because you need faith when you go through this whether you're I have one of the entries for the book was atheist under age 2 and I said there are no atheists in infertility foxholes because you know whatever it is if it's a yoga if it's the tarot cards if it's

going to your priest if it's whatever it is you have to believe that you have to see that child at the other end.

How did you assemble the cast and even the director. Was that the first thing you did.

No. So I sent out a call I've dabbled in the theater world and I'm working on another show right now called Yiddish yoga. I found Claire. Claire Drache who is the actress and she's amazing. And then we found our two puppet characters estrogen and lucky through Claire. They've all worked together in the past. So the synergy and the energy they bring as an ensemble is unbelievable. And Hamlet. I also Putt-Putt Lewinsky she has just arrived from Israel three months ago and it was really a match made in heaven. We speak the same language and we it's just

the collaborative process is amazing. We're trying to move away esthetically too from a kind of realism and a kitchen sink drama where it's just about like a very traditional story of infertility that you would hear on like an Oprah show. And we're trying to inject more device theatre more physical humor more choreography and a little more of the absurdism of the infertility world without trivializing it. You must see one of my doctors who I told I was writing this years ago. I mean it started five years ago. Even the process. And he said I'll only come to the show if it's funny because he's he hears and I'm sure you as a as an acupuncturist you see all the stories day in and

day out and you know you come to the theater and my mother used to say she loved Broadway. You have to make people laugh a little so it has to be entertaining.

I wanted it to be educational as well because I think there is a really lack of education about people's real women women's reproductive lives.

Is there something you think that say physicians or the people in the medical community should be getting out of this or what. What it what is it you're trying to open their eyes to as opposed to say the public in general. I think there's a line in the play about this that infertility and the care for the patient the infertile patient should be treated with the kind of tact.

And compassion that we treat cancer patients. Really there's there's some really funny section in the play where we say why are infertility waiting rooms so sterile we're trying to create new life and they should be beautiful. I mean all doctors waiting rooms. Could use some interior decorating. Just an anecdote. When I first got my Follistim delivery for the first time I had no idea. My husband I looked at the box had no idea. And I have a Ph.D. and in the Master's degree. And I remember calling the doctor on call and my fertility clinic on a Sunday took him three hours to get back to me. And he just said I don't know. Look at the video.

And it was awful. And there is a section of the play that talks about that the vulnerability you you're not. We always need advocates when we go to doctors right. It's always good to have an advocate because we're listening is off. And when you're so arm in this cycle emotionally where you want a baby you often don't hear. They could have told me about the needles and I wasn't hearing.

So I would just say compassion is so important. I think we can't we can't lose sight of the fact that healing occurs through eye contact. Through a warm touch on the hand. I'm going to get you there you know and through honesty.

What did you feel like as someone who went through it and then you invite us to do this. What was missing in the community. Did you feel like you're looking at everything from the point of view of going through infertility succeeding not succeeding.

Yeah. I had to find my tribe and I don't feel like that there was a big support group but I think we're moving in the right direction. You know in this country just with acupuncture places healing centers resolve is a great organization and women taking control of their reproductive lives and learning but it's by telling stories that I think a lot of change can happen. I was sitting in Rittenhouse Square and I was talking with my husband about the project and this woman turned and said you could interview me.

I went through three cycles of IVF. I think that we're shifting people want to talk about it. We also got you know people over here our conversations at dinner and people would turn around and say Don't do it. Don't have kids and that's in the play actually of like people giving you unsolicited advice all the time and it gets really frustrating.

Now Lisa was kind enough to let me record the opening scene of the play. So here is a sneak preview of almost pregnant.

Hello back. Doctor came in and told me to tell you that you know that you're pregnant.

Oh wait can you hold. I'm waiting. Hello.

Will you come into the office the doctor wants to talk with you. My. Pregnant woman now pregnant.

You're almost pregnant. Small world of infertility.

You're walking my line.

Living in the aggravating always in between the place of being almost almost pregnant almost the mother almost broke almost broken. You are living a liminal life. Liminal to be on the threshold almost standing right in the doorway.

We sit across from Dr. Creighton and little bird is silver haired fast talking woman and she lying then this can't be good.

You are pregnant which is good. Your body soul knows how and wants to make a baby. What's your pregnancy is ectopic. That means the embryo is growing outside of your uterus which is not good in the open. So we will have to watch out. Hopefully it will stop growing and take care of itself.

Nothing takes care of itself. This is how we are initiated into the world of infertility with an ectopic pregnancy. Brave new words in this world are you by. IVF.

BBF. A R T I F. BBT. When there is no oops pregnancy surprise moment in your life. When you're sore and tired and trying not to be consumed by babies and baby making and charting your body temperature and figuring yourself to see what condition your cervical mucus is in when missing a period is a godsend and not a curse. When getting the so-called curse the monthly curse then you as a decent citizen of a country that loves all things.

Baby and mommy and kiddies begin to wonder why.

Why do you want the poopy diapers that the sleepless nights people who get pregnant just by having home ordinary sex on a slow TV night during the summer have no idea of the self conscious machinations. Infertile folks go through often for years. We turn ourselves inside out after.

Every failed IVF cycle wondering if this is the right path the right thing.

Well maybe we're being punished. The financial burden that the soccer ballet social studies Winnie the Pooh at $15 an hour babysitters who leave the place a mess that toddler tantrums the potty training playdate while at outbreed is out there having the third kid between afternoon ice lattes and a trip to IKEA.

They are not giving much deep thought to the why question why do you want the other mothers.

The obligatory social interaction with people you will have nothing in common with but that you both have both. Your kids are 5.

This is not a test and there is no right answer.

After the ectopic pregnancy my love and I are moving on to you on. The doctor takes the sperm and sticks it up there way up high inside you to help it meet the egg. This should work.

It's a Sunday in February when the car is stuck behind a police line blocking off the road for breast cancer parade. KING way this is happening.

Between inside us right to where I'm getting inseminating.

Actually we wait and wait and wait and watch the parade until like jumped out of the car.

Mermaids and I'm all relating and at 8am on a Sunday morning and I haven't had coffee because it's not that great for you when you're trying to get knocked up. I waved the bottle around under-class office and just slowly over my depression you mean you know let's get through to the clinic on time so I can open my legs. And get. Repasted. Pregnant and.

My domestic nothing like that. By the time I finished he was slapping me up big orange cones out of the way and guiding me through traffic all the bullies.

One might have give me the thing about how she's entitled. She's looking at death in the eye and we're trying to look at New Life.

Be romantic with your partner tonight.

Almost pregnant. Written by Lisa Rutenberg will be performed live at the Old City Jewish art center in Philadelphia on November 15th and 25th at 8:00 p.m.. A link to purchase tickets is available on our site at waiting for babies. Almost pregnant stars Claire Golden Drake, Kellie Cooper and Mark C. Johnson. With music by Gabe Miller and directed by Hamutal Posklinsky. Also check the site for all the program we talked about in the beginning of the episode including the screening of one more shot on November 18th and the panel at Temple University discussing infertility and religion on December 1st. We'll be back soon with one of the more intense interviews I've ever done and follow along someone's rather scary path through the world of infertility. But till then this is Steven Mavros see you next time.

With a long family history of infertility on both sides, Lizzie & John were worried conceiving the first time would be hard, but they had good luck the first month they tried and their son Luke was born after an uncomplicated pregnancy.  3 years later, and ready to have another, what they thought would be smooth sailing turned into all the things they were worried about the first time. Welcome to Secondary Infertility...

The Art of Waiting: On Fertility, Medicine and Motherhood by Belle Boggs as discussed by Lizzie can be found wherever books are sold. 

Useful links with more information on Endometriosis can be found here:

• American College of Obstetricians and Gynecologists
• The Endometriosis Foundation
• Wikipedia for Endometriosis

Transcript

So far through the show we've had good discussions about miscarriage ectopic pregnancies azoospermia, genetic issues, and the havoc infertility can wreak on a marriage.

Some experience infertility through basically just never being able to get pregnant. Others find getting pregnant to be easy but actually bringing the pregnancy to term and having an actual baby in the arms the possible part. This is waiting for babies. I'm Steven Mavros. And today I want to bring you a story about what it's like when you start off not infertile. Here's an example. You're a couple you get married when you think it might be a good time to have a child with a goalie or any other euphemism you want for stopping the use of contraception. And it just happens. You get pregnant. You have a normal pregnancy you give birth have a healthy child.

You treasure and enjoy what it's like to be a parent even though the concept of eight hours of sleep seems like a forgotten dream a year or two or three later you decide you want to give your child the Sibyl and grow your family. So you do the same thing you did last time you play the goalie and. Nothing happened. You try some more. And still nothing happens. You think wait I've done this before. What's different. This is what's known as secondary and for two and for some it can be just as devastating as what those who've never once been pregnant go through.

Today's story comes from Lizzie and John Rothwell who are in their early 30s when they first thought about having a child. One of the first questions I always ask when interviewing someone is whether they always knew they wanted to have kids but I've never gotten this response. I felt like. My whole life since I was in adolescence I have been making monthly payments on a very expensive power drill.

That I would be really upset if I never got to use it.

So there is a biological drive to have children in addition to wanting a family.

Yeah I have no analogies I just knew I wanted kids. It was easy.

Now Lizzie's down payments for her power drill seemingly paid off and they conceived very quickly. Now I say quickly but it wasn't easy. Right before they started trying Lizzie was struggling with something that at first appeared to have nothing to do with fertility. Basically from May of 2012 until I got pregnant with Luke in October of that year I was in constant abdominal pain.

And I've gone to see a gastro intestinal doctor once in Philadelphia and we sort of ruled out like scary stuff like Crohn's disease and stuff but we hadn't gotten any further. And then I got pregnant and that all went away.

I felt miraculously better. Like instantly it was yeah. It was.

Yeah that was really a trying period because you know it was terrible.

You were laid up. There were some nights you couldn't get out of bed. So we would play as Yeah. So we.

So had you noticed a correlation between the pain and your periods.

No I always had really bad periods. But it was like that spring they got like really bad. And then like just more and more it wasn't just during my period it was like all of the time. And it was like it was really disabling like I started a new job and I felt like I couldn't really cope with it because I just was in pain all the time. I was very surprised that I got pregnant then because I wasn't we didn't burn in the mood at least I wasn't in the mood at all but I was in a lot of pain.

So abdominal pain and sex don't necessarily mean they're not the best.

So that kind of you know totally came out of the blue. And statistically speaking I think we just got really fucking lucky.

Did you ever find anything that was helpful outside from getting pregnant.

I tried on showers. We got some. Ideas.

Meditation is kind of like a weird purchase.

It was very very well very highly recommended people who have IBS situation.

So when did you do that meditation. I don't really remember get very first let's. It wasn't just here. I'm just general meditation too. So I just got solidarity and I get to the only part I remember was that you entered a room like a vault that had a wheel and you could spin a wheel to either speed up your digestive track or the other way to slow that.

Yeah. That's yeah. And you visualize your pain level as a dial too and you try to dilute that.

And you feel like it was helpful.

I don't know maybe maybe if I had stuck maybe if I hadn't gotten knocked up I would have stuck with him.

Maybe if you had maybe if you had IBS opposed.

Well but you do I mean that's just the center of it so.

So sure I had it it just wasn't the root cause of the problem. Right. As far as I can tell.

Now Lizzie at this point had done enough Google research and suspected she probably had endometriosis. And this is why getting pregnant solved her problem. Her GI doc who hadn't thought of sending her to a good ecologist yet essentially confirmed her thoughts.

And when you finally did get pregnant and you followed up with that gastroenterologists.

Yeah I was like I felt a great deal like oh that makes sense we were starting to suspect that maybe there was end of it and she said like I just need to stay pregnant for the next 15 years.

I was like oh cool.

You have a prescription for that?

Let's take a moment to talk about endometriosis for a second. So the endometrium is the layer of cells that lines the inside of the uterus. These cells are responsive to hormones particularly estrogen and plump and grow over the course of a cycle and then slough off during a period. OK. Can we all agree slough is just a weird word? anyway endometriosis is when cells that act just like the endometrium start growing in places they shouldn't notably outside the uterus on the ovaries and anywhere in the abdominal cavity basically places you do not want.

Cells that grown reaction or hormones can either get in the way stretchin and inflame surrounding tissues or in some cases even causal organ and tissues to stick together which you definitely don't want. One of the difficulties have been endometriosis is that it's hard to diagnose. It's rare to be able to see it on an ultrasound. And often the only way to confirm that someone has it is by doing a laparoscopy or a surgery where you take a camera and look into the abdominal cavity. Not exactly ideal. So the main symptom of endometriosis is abdominal pain. For most women the symptoms are at their worst around their period. But for some this pain can become chronic. And last of all month long the other complication of

endometriosis can but not always be infertility. One of the clues that someone has endometriosis is a near complete relief of symptoms after a woman becomes pregnant and suddenly the hormonal balance in the body has changed and shifted and estrogen is no longer the dominant force. So those cells sort of become quiet. Mind you it doesn't cure the problem but when someone is pregnant and often during breastfeeding when a woman is not getting a little psycho The symptoms can stay away. Coming full circle given that Lizzie had this intense abdominal pain it did get worse around her cycle and then started to become chronic with no signs of gastrointestinal problems and disappeared completely with pregnancy.

The theory was she most likely had end ended the truce. So Lizzie with her chronic pain finally calmed from getting pregnant but went on to have a normal pregnancy and she gave birth to their son Luke when she was 32 years old.

After giving birth and breastfeeding for a while her periods return and thankfully weren't nearly as bad as before and she wasn't getting any pain between her periods. So after three years of enjoying life with her new son John and Lizzie decided it might be time to try for another child back before conceiving Luke. Lizzie was pretty sure she was going to have a hard time conceiving the first time around even before she had the bout of abdominal pain. So the second time around she was very sensitive to how long things were taking. Being 35 at this point she was quick to seek help when she didn't conceive as fast as she did last night. I have to admit because I thought it would be hard like.

There was a little part. It was like a little smug about the whole thing and I was like oh I dodged that bullet like for to go. I'm just 35 now so I should be fine. Like we're getting it's all done just right on schedule.

So yeah. But once we had gone like three or four months I was like now we got to see the doctor right now which is pretty fast I guess. Like I don't think most people would necessarily assume that but you had your eyes on the clock and like when we knew exactly what I was on the list.

And like yeah I ovulate pretty regularly. That's not my diet. That wasn't the issue.

And also the longer term clock which is if this was going to continue to be a problem you didn't want to have to.

That's true. Like I said. Yeah.

I didn't I didn't want to draw out the process of having more children for indefinite years. Yes.

So very quickly she got a referral from her. She went to see a fertility specialist. And after her first visit a few issues quickly became apparent.

Probably our first deployment they were like oh yeah you've got a kid at home like this should all work out.

And then they did you know like the basic tests and saw endometriomas on my ovaries.

So at that point once they saw that and then my you know at this age and age levels which were all kind of borderline then they would you know at first they were like oh we would say you guys should drive by yourselves for another three or four months and once they saw all the numbers and they said Now let's get going.

They also quickly found out that when you're trying very hard to conceive that window where you need to actually you know do the thing doesn't occur at the most convenient times.

Yeah. We did one cycle there was Clomid only one when you just. Well no it wasn't even an IOI. It was just a Clomid cycle. When we were in Florida because it was really awkward we had to kick your brother and tell him room was super super awkward.

Are there other brothers wedding and we have all been booked into one room because there were limited numbers of rooms.

So that's where it was.

How did that go down. You know.

At some point I put them aside and I said can you come back. Can I make sure you get back later. There was no other way to do it.

Did you ever say no to this.

Yet.

I was a little bit of a throwback. Oh god I'm remembering because I definitely when I had to ask my rather than immediately felt awkward and started like explaining it he called back and I actually looked like you say have known.

That there was an older guy sitting in the room. We didn't know that that guy wasn't going to come back and tell him Matt Kelce just told I think we trusted your brother to take care of me.

Yeah.

And this was the first time you were like a good family.

But that didn't work.

So with Clomid by itself not working for a few cycles they started combining the Clomid with you were intrauterine insemination. They did this three times and again had no luck. Secondary infertility is interesting because there's already a child in the picture. So even the word infertility particularly John and Lizzie didn't feel right.

I don't know how often I felt called upon to like call it anything I didn't like if I didn't get pregnant.

I mean that's what it takes to realize it. The question of infertility is like shit are we ever going to have a baby.

Instead of the concept of infertility Lizzie had a slightly different thought process.

No it made me think about death a lot. But I mean yes that's not. Not that I felt my death was imminent in any way.

But I just certainly like wow this is this period of my life is over like significantly sooner than I thought it would be. So your own mortality what you were thinking like your own death or just the of my own mortality my parent's mortality just named you really ruminate on.

The life span of people.

You know there's a great book that came out about a year ago like sort of right when I was doing IVF called the art of waiting.

You know if you guys have heard of that I want to read that one it's by Bell Boggs. It's great. It's a she is a writer experienced infertility end up doing IVF has a daughter but the way she talked about it was you know somewhat literary somewhat political. And so yeah reading that was awful.

You know if this baby thing is not going to happen you get impatient it's like yeah. I mean really really current circumstances when they're predicated upon a certain event which against your expectations is not arriving and infertility like you know in addition to the grief and the loss. It completely maddening because.

Of the cycle of it every month. You know you're always waiting for something. And it just doesn't leave a lot of headspace for anything else. I mean you and then you're like beating yourself up for letting it take up that had. But I remember struggling to figure out.

What comfort I can offer when you would say things like I mean I don't I don't know what to look like. My body is broken like I guess I'm just old and dried up and yeah these things he would say.

I mean I think for me because I did conceive at 32 and I didn't at 35 like there was a hole. I mean on one level like already having a kid is a great way to experience infertility because you already have a kid and you do have some amount of confidence that your body can do this but somehow it like then played much more into like.

Thinking about mortality and just you know the way that your body changes and all of that.

And I think also you know in thinking about timelines around having a family both John and I our parents are not young like they're allowed to be more precise.

But my parents my dad's like 82. Yeah. My mom’s 72. John’s dad was a Catholic priest before he had kids.

He had kids like over again.

My mother was a secretary of the rectory also. So that's better.

So Luke was the first grandchild on both sides. So I think that there is definitely a story that.

I wanted to have kids younger so that my kids didn't necessarily feel the same pressure that no one ever put on me.

But I just felt that anyway about you know having grandchildren. Well they did. They put it on me but not directly. And a very nicely. Night you got your parents there both of our parents now all are going to deny that for a second.

Secondary infertility provides unique challenges especially during the fertility treatment process. Well someone's going through treatment. Aside from the effects of the medications and the financial cost there's also the amount of time it can take. And I don't mean before conceiving but literally time out of the day going for bloodwork ultrasounds diagnostics consultations and on and on. Now take all of that an added to the already insanely difficult concept of scheduling when you have two working parents managing careers that hopefully are stable and a two and a half year old after the third eye you didn't work. It was clear that the bigger jump into IVF was looming as the next step in their

treatment plan.

This led to a split in John and was he's thinking in many ways because of timing I had made some kind of peace already with the one child scenario. So I was happy to keep going.

But hey it's already great. Like we already have a child. You know your body's already done what it had to do but it was so good to being pregnant.

I just wanted to get pregnant again. I knew once I got to there you go.

And there were there were other stressors too like any significant ones.

This nation does not provide for its mothers. Yes.

And you were holding off making career decisions or you were holding off making these plans because you had this other thing to deal with.

We both did. So I say I was happy with the one child scenario but I wanted another kid like me and I want wanted to happen. And we both wanted it to happen. And. Because there is no support for women in the workforce when they get pregnant like we had to figure out how to time it with my wife's biology like it's bizarre and it's dumb but it's it's a situation we were we were.

Not to mention the actual financial cost of infertility treatment.

Do you feel like you were.

Do you feel like you were a part of the process or did you feel like you were if I were married and we have a child so I was definitely part of the process because if Lizzie has to go to the doctors in the morning then I'm you know I have to you know even if I was at the store until 1:00 in the morning the night before I have to get up at 7:00 and bring Luke in. So in that sense of partnership there's always going to be the give and take. You know we talked about how it can be time consuming sometimes

in terms of researching and paying attention to all the details. I feel like I just did a ditto and a half to be able to listen respectfully and understand what was happening when and why.

Yeah. I didn't feel like there was a lack of involvement. And like if anything. You know he'd start offering a ton of opinions about certain aspects of it I probably like right now.

So.

Did you find that your relationship or your parenting towards loop changed at all. Did you like love a little bit more or were you annoyed more. Yeah well I mean so all of this coincided with like him from age two to three and a half which is you know.

Typically a somewhat challenging period.

So sometimes went one way where I'd be like oh I'm so grateful that I have this child like it's so easy to have patience with it you know and then sometimes I would just spend time beating myself up around like why can't I have a child. So.

I mean the short answer is is no I mean he was already his own singular human tiny human being.

And so I mean if if it wasn't going to be IVF it distracts your attention from your child there's always a record from a child that big believer in good enough parenting as long as you pay attention most of the time. By.

Given just how difficult it is to plan through scheduling work fertility treatments and quality time with your son Luke Lizzie and John both impressed me with also figuring out how to add self-care which is often what goes out the window when appointments are piling up all day and I couldn't get away.

Did you find that to be helpful. Yes it was great. No I'm saying I'm 100 percent it was awesome.

Full disclosure here. Her acupuncturist was yours truly.

It's awesome anyway. Like nothing else the chill that's so great you value the time a lot.

Yeah. I know you have made sure that I could work around you know my schedule which is a day care vigorous days which is challenging in order to make it happen.

Right.

So chill you out given the you know the stakes side he said was very valuable.

Did you have something. I had a therapist which was good. Good enough.

Did they test you through the course of things. They did. Vanilla.

Yes. When we were doing the SATs and you know you went over your numbers and then just went over my numbers. What did you what did you do. You didn't slap me in the ass and pat me on the.

Way to go champ like squats you're like I'm sorry I figured you want to hear that.

I this is the funniest thing.

Like I don't know how my first goals of the podcast were to get people to understand what people would especially women go through infertility. Can we make the second goal.

How to how to get away from congratulating men on their sperm count. I like to go down I think I have. Around this time. After three failed you. And IVF being something they both want shorter. As they often do.

Life events change their thinking entirely. IVF really wasn't.

Like on the table at all until.

So this is crazy timing. A year ago tomorrow a really good friend of mine passed away. She'd been in a non-responsive state for seven years before that because of a bike accident. But you know that was still like a fresh loss.

Or a fresh round of grief I guess. So when that happened I had a moment where I kind of freaked out at the idea of only having one child and how like oppressively protective I was going to be of my single child. So that was like pretty much a 180 on the whole question of IVF for me.

And when that happened I said hey I think we should change our plans entirely and we did really quickly.

Yes.

Yes we do yeah because frankly the only real reason I thought I didn't want to do IVF was this was the repetition of expense and it's like how much do I really want to pay for kid is what it starts to feel get to say well pay for the chance that I can.

And it was a really crazy thing right.

I mean like if you told me you can pay $8000 and have a kid like you're done. But as it is you can pay in dollars and have a shitty month or two. So we had. We did have like a pretty in-depth discussion or like a pretty firm agreement. Of course it's. If you do it and it works then it's hard to know how firm your agreement was.

But we we said we were only going to do it once and we were doing it somewhat just to put the issue to bed. So we do know we tried everything.

And then we're moving on in life so down the IVF path they went and everything that came with it. Bloodwork ultrasounds injectable hormones the whole thing. As you've already heard in previous episodes it can be both intense and hilarious.

Who did the injections.

By the way that was the sound of Lizzie raising her hand.

Except the one in your butt. So I just had the one trigger shot and I got my friend who was a doctor helped me with the one injection that wasn't on my stomach.

And where was John he was if I was at work. I mean the timing of this is pretty. Yeah that one is ice. You have to do it at the right time.

And I had 36 hours before and he was at work almost always at work. So yeah my friends have a bunch of little kids so I look and I just took the bus up to their house and played with their kids are actually both doctors so I had my choice of husband or the wife.

Mean it was great.

I highly recommend them as an actor. Let them work. Do you ever have to do any of the needles. I never did.

And to be honest with you that's for the best because I developed late life. Needle fear. They them.

So as we've already talked about with IVF IVF often entails doing injectable hormones these hormones stimulate the growth of follicles that contain the eggs and that the physician will go in and retrieve the eggs after they've grown to maturity. Now aside from the stress of the whole process it's often not easy to deal with the hormones themselves as any change in hormone levels for a woman or men for that matter can affect your mood your desires your weight your digestion all of it. Lizzie felt lucky that they didn't appear to be affecting her as much as she had her did affect other people.

Like do you feel like the hormones were affecting her in ways that you could see.

No. Surprisingly enough.

Because I I actually you know I was concerned about that.

I read about it and I I guess what I'm gauging it against though is the hormone reaction that comes post namely after birth because my wife between the two of us I am I tend to be the sentimental one. But we're proud of that effect. But after birth never forget she. Lizzy was there with the newborn and just weeping. And so she's going to go to college. I was like oh this is something I'm not used to dealing with the conflicts of my marriage. And I said

OK. So yeah compared to that.

No not a blip.

Again at the comparison of scales either my entire life hormones have had so much effect that I have just like adjusted to. That's just the way I'm living my life.

And these particular hormones didn't really change you know whatever dramatic effects were already going on.

Or I just got lucky and they didn't have a ton of effect in terms of I mean it wasn't comfortable. Like right before Agur betrayal. Like you just kind of felt blobby and gross but I wasn't in pain and I wasn't especially emotional.

Do you feel like you got used to abdominal pain at that point so it just it was like Who knows.

Like my baseline might just be a way out of whack with everyone else. How is a retrieval going under anesthesia. I'm just fine like it. You know it's got its own weird appeal of getting.

Anesthesia. You don't like it.

No it's terrible. But it was get something else to deal.

With the fact that you have no memory of it.

It's like oh yeah I did yell at you when I woke up when I woke up.

I rang the nurse. You were telling her you were just making sure she was going to go vote.

So when I woke up from that I was saying the first thing I said was Are you registered to vote because this was October 2016.

How is it for you. Just in terms of was doing everything you needed to do in the clinic.

Easy hard. Problematic funny.

Is it easy. Well.

You nailed it.

The most things the producing week was like the week they are grown embryos because they like calling you every two days. That's OK.

What does she mean by growing embryos. So after all the injections she was ready for retrieval. Once all of the eggs are retrieved the embryologist takes a look at the State of them calls out the ones that aren't developed enough to be fertilized and then joins them with the sperm for fertilization either in a dish or with X-C where they inject it right into the egg. Much of the time once the eggs are in the lab patients end up talking to the embryologists more than they do the doctor because the religious are the ones that are fostering the development of the embryo.

These numbers only burned in your consciousness right. So they've got 12 eggs 11 which are six fertilized I guess day one after fertilization and three of them looked good. And then on day three because they don't check them in between or something I forget what day is this get whatever the point is. At one point there were three then there were two. And then when it was free is that there was only one. So that was when I was like sort of losing my shit. But the evil side is we don't have to make any weird decisions about what to do with embryos. So there you go.

I mean really difficult decisions is what I mean by weird in that context. Was that a conversation you guys had before.

Well you have to make it with the paperwork. Yes you do have to like sign a bunch of stuff about like if one of us dies if we get to divorces and improve if we both die.

I mean I think that we in that case just said like donate to science but so they had one embryo to work with.

And as you've seen from some of our past interviews sometimes one is all you need. But before they could go forward Lucy had to have surgery. The one thing she had successfully avoided all these years dealing with endometriosis.

When did you even find out that you had a problem.

Yeah. In the middle of my stem cycle which I was like oh cool guys leg. How long has that been around. And I mean honestly it was a different doctor on the day that he found the polyp and he also sort of acted a little taken aback by the situation. So sure if I went on like get all bitter and pissed off I was part of me it's like well maybe it wasn't my problem the whole time.

Other than this dumb polyp and if he had taken a poll about that maybe I could've gotten pregnant without IVF.

But you know I'm only going to go down that road so far had it been there the whole time. I don't know.

Who knows. I don't know how to read an ultrasound. Millions of pounds done and I still need time to look at the screen on my guy I don't know what the fuck you're telling me is whatever.

What was the surgery anything of remembrance for you.

But my anesthesiologist at that time sort of had like poorly applied lipstick and that like really made me nervous.

Look I trust you little more precision would be the thing in this case.

So that's what I remember from that one.

But it was like a little extra a bit of a lesson here. Well if you find out this is what happens when you die or what have you turned over.

And so the first time around it was very smooth it was just like at one point.

Got it right. Good to go and this time like she had to. It was really painful.

She tried a couple of different occasions and like my wrist ended up like all black and yellow and stuff I have no idea what her name is but I wouldn't recommend her having only one embryo.

After all they put into it changed their perspective a bit and reminded them both of what they had been sacrificing in the quest for another child. And in a sense how grateful they were for what they had. The timing of their embryo transfer though wasn't with Lizzie and John expected because something happened to the world around us and it also changed their perspective.

I mean we were talking about it when we found that we only had one embryo at least from my point of view we were ready to be let go. Yeah. All right let's.

I mean the other here because we did other things on hold and we made the conscious decision to say we can't do that forever and we're not going to be the first second child when we already have one.

The other the timing thing that ended up we were with the embryo transfer was that it was we didn't get to time it exactly we just word they were monitoring my very closely.

I usually have really regular periods but for whatever reason you know either because my body was still getting over the IVF drugs are back to me or whatever it was it got kind of drawn out and we ended up having to transfer. Let's see about 10 days after Trump was elected. And we definitely both looked to each other and we're like are we fucking doing this like this is insane.

Like what. What are we doing. Like why do we want a second. Why do we want the child we have like this. Everything is terrible. So I think that we were both at that point just assuming it was go to work because you know we didn't up with one embryo I was like Well clearly you know my eggs are worth shit at this point and you know let's just get this thing behind us.

So I think our assumption then was let's do this then it will be over.

But at the same time just like the fact that the goal of it was to make a new life in the context we're in also felt that insane what was a transfer like.

I mean you had like one you kind of had like the one I'm done.

Yeah let's see how it go.

I think John had hurt his hand at work that day and I was holding his hand and like I think re-inserted is so hard. Yeah I have never had to pay more in my life.

It was really terrible.

And I like when they turned off all the lights in the room and my then the doctor has like a hit livable and you're just like fuck me like this is the worst case scenario like this was going to be long you know like I just I cracked up and I was like I'm sorry.

Just the absurdity of this. And luckily the doctor was great. He was like you know I don't even notice anymore. But it is completely absurd you're right.

Thank you for acknowledging that we were in pain because your hand I was trying to get them which he hadn't.

And it started later that I had to restrain myself.

But yeah and then they come in. Like with the embryo they're like OK. Say your name and birth date. And I was like oh you're freaking me out because like you know clearly.

They're confirming that they're getting it right. But I said OK this is really freaking me out. They are like no you should freak out if these didn't match. I was like well at that point.

I think I would have kicked everything off the table and been screaming at that did it.

Was it painful with an uncomfortable. It's incredibly uncomfortable but I mean it's very temporary.

So with the embryo put back in all they had left to do was wait. And sometimes it's hard to stay positive.

It took a coworker saying Wake up. It only takes one to be let go. Oh it's true. And it was like a day before we got the test back.

Yeah. I mean I tested before I went in the morning I wasn't really happy it was disbelief.

I mean I don't know I just know it was great. Was it was awesome.

It turns out the person who was the least worried that everything was going to turn out OK.

So this is somebody who sort of knew something was going on because like me you know there were a lot of mornings that I had to go to the doctor or whatever. I think at some point you know he was asking me why I had to go to the doctor and I either didn't want him to worry or I was just like out of coming up with stories or something. So I was like because I'm trying to get pregnant.

And the doctors are going to help me have a baby which he interpreted as I'm going to have a baby sister.

So he told everyone in his day care that he is going to have a baby sister.

And they all like how did he get that idea in his head.

And I was like gosh I don't know. Don't ask me if I'm pregnant.

So then months later whether he in fact when I when I was pregnant they're all like how. How did Luke know that you were going to get pregnant.

I was like I don't know if the mercury part is how did he know it was going to be a girl.

Yes it was finally Darrius are going to want to find out the gender of it takes.

We did find out and we told them look you're going to have a sister who died a year ago you know in terms of your enemy Torrijos this has anyone I assume this is a conversation that maybe happens later but is anyone talks about what to do. Post delivery.

Yeah. Well no I mean I actually do have to. This is maybe related maybe not.

But my 20 week ultrasound there was enough like funny business going on with my ovaries that I have to go get them checked out after the baby's born because they were like We're not going to try to figure out like what all this crap hanging off your ovaries is right now because it could just be pregnancy you know like there's too many different variables.

But you know so like worst case scenario that's something really scary like ovarian cancer.

I mean I assume that you all have like the reprieve of nursing again for as long as I'm doing that.

I don't think I know mentri as this is going to be an issue. But you know somewhere around a year from now I guess the question will be doing.

So as we were doing this interview Lizzie was a little over 38 weeks pregnant right as we were wrapping up. Laura asked whether their original plan had involved more than two kids and whether there was a plan to try again. And then Lizzie started sharing why she wasn't kidding about assuming things would be difficult for her. And she started to tell us about her family history. Lizzie's mom had trouble and conceived the first time soon after getting an HSG which is the test to see if the fallopian tubes are clear. She then had another HSG right before getting pregnant again the second time around. And apparently John's parents had difficulty as well.

Well my mom was 38 when she started and she had two more kids after me. So she had 38 40 42 she had babies. The doctors told them right off the bat. I mean this was the 80s. But the doctors said like look you have less than 1 percent chance of getting fertile because of having a way of getting pregnant because not only was my mom 38 and having trouble but my dad's sperm count was low on top of that. So it was like they were kind of telling her it's not going to happen but we'll do these are you guys. So she had she had me by or an insemination she and my younger brother by intrauterine insemination. But then my youngest brother was just like

yeah.

And that's exactly it. It was exactly the same for my parents. My youngest of three. And my mom used H s gs for her first two and then she conceived me wearing a diaphragms so I can see you know.

So I guess for those 38 I don't know. We haven't figured that one.

But it's not in our plans.

It's not. We got a complete set. Wrap it up.

I love it when people give me end lines. I said that's all life is great says Luke’s predicted baby sister Ursula was born in August.

Now wait before we go I wanted to bring it back around to the metaphor that started this whole thing.

Do you have a power drill? Do you use it.

Yeah. Oh not as often as I should have. Do you feel like you've been to a lot of money on less than how much money I spent maintaining my reproductive system.

That was the line I was looking for.

Thanks so much to Lizzie and John for telling their story we have links on our site to the book they were talking about the art of waiting as well as more information on endometriosis for those interested in learning more at waitingforbabies.com. waiting for babies is produced by me Steven Mavros, us with help on interviews by my office manager extraordinaire Laura Mullin. Our theme music is by quiet music for tiny robots. In case you missed the last episode, waiting for babies is one of the community partners for the ART of infertility and their exhibition called cradling creativity will be in Philadelphia the entire month of November at the Old City Jewish art center. So come visit the art of infertility curates our work of all

kinds created by women and men who struggled with infertility. Links to all of that information will be on our site at waiting for babies doc. We'll be back soon with more stories of infertility. Till then. This is Steven Mavros. See you next time.

There were actually too many bonus clips I could have added at the end here but this one was perfect. See both Laura and I are very allergic to cats and we do these interviews at people's homes so that can be a hazard at times. Sometimes we're smart enough to ask whether they have cats ahead of time and we take allergy meds but sometimes we forget to do that. And for some reason cats seem to be drawn to me and want to be best.

We'll start with basics just in terms of when you guys first wanted to start trying was there.

Sorry. This was a cat a few men. I love the record.

It was my first holidays were just standing there and I feel like I lost all this I started trying to take a to see him coming close to wavier are going trying to get better. Sometimes it's like I feel like sometimes I stare them down for a little while but then they're just like goodness thank you for doing something that I just don't like because then it gets worse. And I was ready to get tangled and that was the other reason I didn't move because I knew

it was going crazy.

OK great let's talk about babies instead. Hey.

This audio features the song "Lullaby for a Broken Circuit" and "ou Were My Robot Lover" by Quiet Music for Tiny Robots, "Readers, Do You Read" by Chris Zabriskie, and "The Last Slice of Pecan Pie (Instrumental Version)" by Josh Woodward, all available under a Creative Commons Attribution license.

Elizabeth and Scott tried for over a year to conceive before becoming instant parents of 3 girls after his sister got sick. When the girls moved away, they started trying again and years of frustration followed. Maria and Kevin were barely 25 when they landed at a fertility specialist, with options they weren't interested in.  After randomly meeting in DC, they combined their passions and conceived of something to help everyone going through what they were.  Our live episode was recorded on stage at our launch party in Philadelphia on August 9th, 2017 at We Work in Northern Liberties. 

ART of Infertility 

The ART of Infertility is an international arts organization based in the U.S. Founded in 2014, we curate innovative and emotionally provoking art exhibits to portray the realities, pains and joys of living with IF. We also design engaging curriculums to host art and writing workshops. We plan educational, outreach events. We advocate for infertility rights. Most of all, we provide support for those living in the shadows of infertility. Through art, we break the silence around reproductive grief and push back against common misconceptions. We invite you to join us in our fight to make infertility visible.

Photos from the WFB Live Event and Launch Party - August 9th, 2017

Transcript

(transcripts are for purposes of searching and are approximations at best)

Hey everyone, this is Steven Mavros and this is a special edition of Waiting for Babies recorded live at our launch party on August 9th at We Work in Northern Liberties in Philadelphia. I was joined onstage by our associate producer Laura Mullin and our guests for the evening were Elizabeth Walker and Maria Novotny who are the co-directors of the art of infertility an arts organization that curates innovative and emotionally provocative art exhibitions to portray the realities pains and joys of living with infertility. Elizabeth founded the organization back in 2014 after going through a long struggle with infertility. And Maria joined soon after. This is the story of how they got their.

So I kind of want to first of all thank you all so much for being here. You guys are fantastic my family my friends are here and it's awesome. So I'm very very thankful to have with me as our guest Elizabeth Walker and Maria Novotny who came all the way from Michigan and Wisconsin to be here. And I'd like to bring Elizabeth up on the stage now.

You just have to turn the microphone on and I will. Welcome.

Thank you. Thanks for being here. So excited to be here.

Essentially we are going to go through this like I would normally on the podcast I'm going to just ask a lot of questions. We're going to start with basics and kind of work from there. I like to start back in the beginning when you first started trying to get pregnant and trying to conceive and you got married when you were 26. And you waited a few years before I actually started to try. But I know you're a planner. So even before you started physically trying you already had some books and even had a funny idea of like when your timing should be. Yes so my husband I got married and we knew we didn't want to try.

To add to our family right away we were pretty content adjusting to marriage and just doing our thing. And I think I was ready probably a couple years before my husband was and we talk about it pretty regularly. And his solution because he didn't really feel like making a decision about it was for me to just decide when I felt the time was right and I would just go off birth control and not tell him and that he would just be happy like just be surprised and happy when it happened. So I didn't think that was a good idea at all. That's something terrible to me. So we didn't go with that plan but I did. I started doing some research and reading some books and talked

to my doctor and took prenatal vitamins and you know figured out all the things I needed to do before we would start trying to conceive. So the kind of the last plan was that my favorite tampons were being discontinued like they were no longer going to be available. And when I realized this I thought I better stock up because they're not going to be Bill any more. And I bought a couple of cases online and had them shipped to my house and then I thought OK well how long will these last me like maybe my plan should be when the tampons are gone. That would be a good time to start trying to have that baby. So I kind of did the math and I told my husband I think this is a good plan and he kind of looked

at me like I was completely crazy. But he's like OK so that's what happened when the two months were gone in less Fox's open. Like OK when he is gone we'll try. I feel like.

I feel like some women I know like some women have kind of a background of fear that they're going to have trouble getting pregnant but that doesn't sound like it was you know it wasn't at all.

I really felt like I would be some kind of like pregnancy overachiever like I would just decide to try and it would happen. I think I in my life I'm used to being able to set goals and work hard to make you know those goals reality and I thought that pregnancy would be the same. And it turned out that it was not at all.

So you started tracking your cycle and you started doing that for like about six months or so and you started noticing that something was a little off.

I did and I figured you know from my research I knew that I could take some time. Going off birth control before my cycles would regulate but it was pretty clear from charting that my charts were all over the place and they're supposed to kind of follow this nice pretty steady path and then spike and then stay up. Mine didn't. None of that. They were just kind of all over the place. So I knew pretty soon that something was wrong. It didn't feel right to me. And also the time between elation and my next period started or the luteal phase was shorter than it should be. So I would

start my period before any potential embryos that had been created would have time to implant essentially. So I feel like right around the time that you were maybe thinking or contemplating about finding a specialist or at least seeing your g y then life kind of took a little bit of a turn on you and.

Your sister and I got sick and suddenly you found yourself thrust into parenthood.

Exactly. So my sister in law got sick and I remember when I was out of town visiting my sister and my husband called and said Shelly says she's dying and I was like that's completely ridiculous she's not dying like she's being completely dramatic. She was always very dramatic anyway and I was like whatever it's fine I'll come back for my vacation I'll figure this out. She's not dying. That was Halloween and by her birthday on December 1st she was essentially in a medically induced coma. So she was right unfortunately and she had just gotten divorced

and her ex-husband worked midnight so with their 50/50 custody split the girls she had three young girls who were just four six and nine at the time came to live with us on her days along with their dog. So we went from being this you know. Couple carefree with a couple of cats to parenting and having a dog overnight. And well that was a horrible horrible circumstance that. It was still is one of the best experiences in my life having the girls in the house for those months and parenting them and and doing all the things that I want to do as a parent you

know. Tell them to brush their teeth and comforting them after a nightmare and all those things the small things that are so important to me.

How long. So they leave and how long did it take for you guys to get back to it like did that make you want to pause or did that make you want to keep trying.

Yes so Shirley ended up dying and the girls ended up moving to Minnesota which is about 600 miles from where we live in Michigan. So it was completely devastating. Natalie was my sister in law gone. The girls were gone. I couldn't get pregnant. And a lot of people's solution for me to deal with my grief was. Oh we'll just just have a baby like you just need to have a baby of your own and it'll be a happy thing. And they didn't know that we are. We've been struggling that we've been trying to conceive for at this time already.

At least a full year. And it was it was a struggle so we needed to take some time from that to regroup and grieve and figure things out. So it was about two years into dealing with infertility that we finally did go and get tested.

You were you know you were basically dealing with the grief of all of that you were dealing with the grief of infertility you were dealing with the grief of losing your sister in law and losing your girls essentially.

So you make it to a fertility specialist and they come up with the idea that they have a plan for you was there. It sounds like you guys went kind of into treatment you started doing some basic medications like coma pain and then you started doing insemination.

What happened. Yes I started off with my gonna ecologist again I probably would have gone to a specialist sooner but we were still kind of recovering. So I did five cycles of Clomid which was hopefully going to make my relations stronger because my obligation was weak it was weight weak it was not going to result in a baby. So the hope was that if I went on this medication we'd get my. My ambulation date moving sooner and my cycle instead of leader. And make it a stronger better cycle. Did it work for you. It did not work. So my doctor

really wanted us to try six times but I was like it's been five it's not going to happen let's just move on to the next step but we were ready to go see a specialist. So we moved on to a reproductive and technologist and tried some inner inseminations interviewed or inseminations with a hybrid cycle so I was taking oral medications along with injectable medications.

How did you do with the hormones and all the medication.

I honestly didn't have a problem I think I was pretty easy going and we did talk and confirm that with my husband a couple of weeks ago he said I was OK. So really I felt like it wasn't a big deal.

I was going to say husbands don't always say that but I usually just tell them to shut up. So I really felt like it really wasn't.

That much of a problem for me being on the medications. Right. But you were also.

Dealing with other things and there was not only the mental cost of using these hormones but there was a physical cost for you.

Right. So I was diagnosed with fibromyalgia about the same time I was diagnosed with infertility and it's a central sensitisation disorder which basically means like all of your signals are on overdrive. So any pain signal is amplified. And he's and he's of your senses are amplified. So I was dealing with a lot of chronic pain and fatigue. And the solution to deal with that was to start taking some medications that I could not take because I was trying to get pregnant so I couldn't take the medication to make me feel better. But. I needed these other medications to try to get me pregnant. And those medications

were making me feel worse. So it was kind of this vicious cycle of dealing with pain and not getting pregnant and just trying to manage all of that.

Now you had one fun coping mechanism which is that you know this thing takes time every time you try to cycle the month. And at the end of the month when you get your period it can be devastating.

And you had a little trick that yeah it worked OK for a while. But I would go every time my my period started I would go shopping and I would buy a new piece of clothing. And usually it was a top that because I didn't want to buy pants because the goal was that I didn't want to be able to fit into my pants but a sweater might give you a little more time to wear for the first trimester.

So I would go and buy usually a new sweater because it was winter at that time when it started doing this and soon I swear my drawers were just overflowing with sweaters. There were just too many clothes to contain. But I did find it was helpful because it was kind of like my reward for failing every month. In some ways and giving me something to look forward to if I didn't have a baby at least I would look cute. Mine is water I guess.

So at this point did they start talking about moving on and going yeah yeah.

After we finished the for you guys the next step would be IVF. My doctor did did say that if I wanted to we could do an exploratory laparoscopy to do a surgery and look around and check things out before we moved on to IVF. And I felt for me that would give me the most information to make a decision about moving forward and possibly eliminate any problems that could exist that might affect IVF in a negative way. So before moving on to IVF I wanted to do that.

Did they find anything with the exploratory surgery.

They did. They confirmed that I had endometriosis which can also cause problems with conceiving and I found a couple of polyps but basically it was the endometriosis and clean that out and didn't find any other issues so with everything cleaned up and ready to go. And the thought that I would move on to IVF when I was ready wasn't quite ready at that time. But that would be the next step if we decided to move on.

Now you were in recovery for a few weeks from the surgery. Normally you can take like a week or two for people to kind of get back on their feet. You seem like you had a unique way to deal with that and to get you through the time.

Yes so normally I would have been off for a week from work but because of my fibro my fibromyalgia my doctor wanted to give me more time to recover. So I was off work for three weeks and home. And you know you start to feel better but your can't do anything still and it's kind of frustrating. So I really felt like I needed something to do. And my solution for that was to go and buy some art supplies. And so I had my husband drive me to the art supply store because I couldn't drive. And I picked up some papers and some canvases and some paints and thought I'll just go home and like make something. So I took everything home and I started ripping up paper and take apposing and onto

canvas and painting and like using beads and it was just a really great release for me because it just felt like something I could do when I was waiting. And it was helpful and it feels really good to rip a paper. I highly recommend ripping out paper.

So was it at this point that you had an idea that art would be a good thing to keep doing or to help other people.

Yeah when I made that first piece it kind of became something that like an extra tool in my toolbox I tried to rely on a much different tools through out dealing with infertility. So it was a new tool I had. And I really felt well dealing with infertility that it's so invisible you know it was impacting me in such a huge way it was something that was rocking my world and consuming my every thought. But there was nothing that was showing that on the outside. There was no way to to show that. And I felt that art was a way that I could create something that would be tangible and that would be something that was physical proof of my infertility experience.

And at first it was just kind of for myself and then I realized it could be a really great tool for sharing with my friends and family to kind of give them a clue as to what was going on in my life too. So I just started creating some pieces around my experience.

At this point. You're about to go through IVF and they put you on hormones. You do all the injectable medications they basically take your ovaries and turn them from peas to you know golf balls and they. Go in they take the fall they take the eggs out and that is a surgical procedure like basically you're under anesthesia. They're taking a needle kind of piercing through the uterine wall. Fine. Yeah I'm like a good time right. And most of the time people go home and lay on the couch for a day maybe two days and are OK. But you didn't necessarily have that happen.

You know that's happened to me. I I left and I was feeling ok. I remember waking up her man decision saying like yeah this was so easy I could do that again no problem. But we actually had decided already that we were only going to do one one IVF cycle even though we knew that wasn't the best. You know like a recommended plan because it's likely not to succeed and one cycle for our family we felt like it was the best fit. So we had already decided that we would do one cycle and any embryos that resulted from the cycle we would transfer and then our paths at least to genetic Parenthood would be done.

So we had already decided one was it but it was pretty good. However as the day wore on I was feeling really like a lot of increased pressure and a lot of pain and I thought it was just like Gask. They can say I can be a problem after the procedure. But it was pretty clear by the evening that that was not the case. And I ended up in the E.R.. With internal bleeding and ovarian. Oh very in 2000.

And when I explain what I know what I know for sure.

Yeah. So basically you like your your ovaries here and the tubes here and it's supposed to be in a certain spot and it just kind of like it was surrounded like flops over. So it's. Well and that's what I envisioned like I'm a visual person like in my mind my ovary was like flopped over. Well probably because my doctor also said she said later because they had to go in and remove the blood. And by that point actually my ovary had gone back into the right position. But she said there was one one follicle that was kind of bigger and it kind of flopped over. So that's I mean I don't know maybe she didn't know that I was

recovering. Who knows. That was pretty drugs and had done a lot of pain.

So how long did it take to like did the pain go away immediately or were you the really severe pain went away as soon as the surgery was over.

But it was a pretty rough recovery because my stomach was so enlarged from all of the blood that was in my abdomen that I had a lot of bruising and it took me a really long time to recover from that.

Right now just so everyone has an idea this is not a normal thing that happens around. IVF it is a really rare complication. You just happen to have all the luck. I'm very lucky. So how long after that. Did we. Did you feel like you were actually ready to go to the next step of IVF or they actually put the.

Yes. I mean they were treat the eggs and they created embryos and we had. Three beautiful day five blastocysts that were gorgeous and wonderful. We ended up doing a transfer a couple months later so we didn't have to wait too long. Just give me a couple of months to recover and then transferred two of our three embryos and I surprisingly got pregnant. I was not at all prepared to get pregnant because that had never happened before I'd never seen a positive test. I never I took Actually I took a more pregnancy test when I was on birth control than I did when I was trying to

conceive because I was I thought it like when when you were younger and you were trying not to get pregnant. Even when I was married and trying not to get pregnant I was like I was afraid I would be one of those people who got pregnant and didn't know. And so I would get freaked out and by tests every now and then and be really like OK I'm I'm not pregnant. So I actually took more tests before I tried to you know have that baby than I did after that came out right. So my husband I were shocked that it was actually positive and I had maybe to the next day which is the blood test to confirm pregnancy. And it was confirmed my numbers were at a 30 which were

low but not crazy crazy low so we just we're going to wait for the next test and see how things went and hopefully that would increase and double and unfortunately that wasn't the case when I had my next blood draw the numbers had gone down. So it was clear at that point that the pregnancy was ending.

And sometimes what they do afterward is kind of to go in and explore basically to see how the uterus is doing after a miscarriage. And for you it sounds like something they found things that made it even harder.

So I had my my history Scobie which was to check out my uterus to make sure I was good to go for my next transfer to transfer the final embryo. And at that point we found out. That. When my doctor was looking around the screen she was like oh. I'm surprised to see this and I was like oh what is it a surprise that doesn't seem like a good thing. But it was leftover products of conception was essentially a pregnancy tissue. So my doctor was surprised she said Oh you must have been a little further along than we thought you were. Here's this leftover tissue. And then she kind of rounded the

corner and there was more. So. It was not 100 percent evident but likely I asked you know does the fact that there's tissue in two different spots of my uterus mean that it was twins that actually both embryos implanted. And she said well we can't say hundred percent but yes likely that is the case. And to me seeing that on the screen just totally rocks me just having that visual look at the burn and to my memory seeing what that looked like. And from there I really felt like I needed to take time and recover. So I went home and I told my husband you know we can either stop treatment totally altogether and be done

or I need to take a break. So we ended up taking a break.

And during that break you you had been doing art before. And I think at that point you kind of had an idea for turning that art into something more. And created what sounds like you were. Enough are to actually show and create an expedition.

Yeah I it was making more and more pieces especially around the miscarriage and other things that had happened and I knew from starting to attend that support group that there were some other people doing the same thing. So I reached out to a local museum where I live in Jackson Michigan called Elish Art Museum and asked if they would be interested in doing an infertility art exhibit. The idea being that it would contain artwork created by people at different stages of their journey along with some portraits and interviews to explain what the infertility experience is about. And they said yes so we went ahead to move forward with that.

Did that help a lot just in terms of give you something to look forward to. Did that make you want to go back and and keep treating like that.

I really felt like I needed some time so we took we took a whole year off. And then when we well almost a year and when we were back actually transfer the last embryo the month before the exhibit opened and that final transfer was unsuccessful. So at that point you know I was putting things a bit together and really at a time when I wanted to crawl up and crawl on my couch and not talk to anyone I had to like create this exhibit and collect artwork and like talk to people and those really horrible. But in the end it was really the best best thing I could have been doing at that time.

So you brought up that you had a support group.

And what was was that something you organized or was that something that was or it was a pure lead support group by resolve the National Infertility Association. And I was initially going to the group and then later hosted it when the person who was hosting took over or actually need to leave. So I was attending and running support groups and I had the opportunity to go to Advocacy Day in Washington D.C. which is an annual event to lobby on Capitol Hill for improvements to infertility legislation that will help people build their families either via treatment or

adoption.

So I decided to make the trip to D.C. with their what with what was about advocacy day that really spoke to you like why did you want to advocate or why did you want to.

I just feel like you know through doing the art and doing the community event I just felt like there was so much more that I could be doing I really just wanted to be in the community once I was comfortable talking about my own experience through creating art around it and joining with other people and kind of figuring out what infertility meant to me. I wanted to raise awareness and other people and just make it you know kind of bring it out of the shadows so it's not so. So closeted and so so isolating. So we're going to take a pause here and switch over and I'm going to bring up Laura Mullen and Marina Vonni.

So I'm going to assume that compared to the majority of the people here in this room you and your husband actually met in high school. Yeah.

I met my husband when we were both 15. So I've known him for now a little bit more than my whole life. And trust me. I'm not really always proud of being high school sweethearts like it's like a secret thing. I'm like yeah we're high school sweethearts it's kind of like I never thought I would be that person. To be honest with you because he was just this annoying 15 year old boy at the time but the kind of a joke that it's been around in my family a little bit and has been when I turned 18 my parents came home from their anniversary and told me my sisters and I that they were pregnant and that they were going have a baby. So there's an 18 year old

difference between me and my little brother and my husband kind of grew up seeing my mother pregnant and then the birth of my brother and everything like that. And we all come from really large families so Kevin is a large Catholic family.

He's the oldest of four.

And so at what age did you all get married.

We got married when we were 24 years old. So pretty much right out of college. And when we got married essentially my husband took a new job. We were both from Wisconsin and it moved us to Michigan. So at that time we decided to buy a house. We made sure that the House had multiple rooms because really our plan was right away to try and get pregnant. That was something that we kind of grew up it was part of our culture. Like I said his parents got married they had kids right away. My parents got married they kids right away. That was kind of something we were supposed to do.

And so how long we all trying to get pregnant until you realize that you should seek medical advice. Yeah.

So like the little bad Catholics we were we actually tried it before we're married. I know my parents will die. They hear this now. But we did it and it was you know unsuccessful right away. And that actually remember like three months after our wedding I was like wow this is weird that I'm still not pregnant but we kind of just were like oh whatever we're moving we'll figure it out. And so about a little bit over a year we started to think maybe something's up something totally right.

And what was the relationship like during that first year of marriage and then trying with your husband. Yeah.

So actually for the first six months we lived in a hotel which was hell. And I honestly feel like if we got there that we could. That's how we got there and fertility. I mean it was a one bedroom hotel and he was kind of doing this training thing for his job. So that was really hard and stressful. We were trying to get pregnant nothing was happening. We did not have our own space whatsoever. And then we finally moved and got our house. But it was also really isolating because we moved to this new state. We didn't know anybody and our family didn't get it. I mean we didn't even know how to talk to them about this because it was always assumed we would just get knocked up like that's what would happen.

So it was really kind of scary. And I remember a lot of different times just driving back after going the grocery store and seeing like ladies there in the middle of day I was there in the day you know either pregnant or with their kids and I would just be really devastated and upset. And I remember one time actually came home and I left all the groceries in the car and Kevin was in the kitchen and I went to the bathroom quickly and I got my period and I came out and I literally just collapsed on the floor and just started crying and bawling and was so upset that my body couldn't work and was not doing what I had always wanted it to do. And

I actually ended up out of that experience creating a peace that over there called the House that kind of talks a little bit more about how he bought this house and how it always had images of this extra bedroom being this baby's bedroom and having Kevin come home and make dinner. And we had a little playroom actually set up. Off to the kitchen and not knowing any more what that it would mean for us. And what that would mean for us especially living in a place that's totally new and we didn't really have anyone to go to or talk to about.

So at the age of 25 you then went to a fertility clinic. What was that like.

Yeah. So around that time actually I think right after I had this like little breakdown Kevin was like we need to go make an appointment. So we actually started going to the gynecologist said first like maybe midway when we were trying to get pregnant I was using our relation test everything was coming back fine. I was getting my period nearly like on the day all the time. Kevin when we went to the gynecologist they set him up with a urologist appointment and he got his sperm tested everything came back for that pretty inconclusive. So then we were recommended to go to our local

fertility clinic and we did that. And I remember in that consultation it was pretty much recommended that because those are ovulating so regularly at the time and because of his sperm test being inconclusive that we should move right away to IUI and her and it's in motion which we just learned about. So. From that experience we kind of left that meeting. And I remember driving back to our house it was only about 10 minutes. And I remember thinking it was quiet right away if I should talk to him about what he was thinking. We were kind of just trying to

process what that actually meant to do I you I. And without even going through clomid or hormonal treatments or anything like that. And. I think right away I said I don't want to do that. And he looked at me and he said Oh good I don't want to do it either. And I was like oh god thank god it feels that way for us. I think it was just like we were only been married for about a year and a half. We had always thought that this is what it was going to be and we now didn't know what our life was going to be like what we wanted to do with it. And even if treatment was right we were never really anti treatment. We just didn't

know if that's what we wanted to do. And we just didn't feel like at 25 we could make that decision. So we kind of decided to just walk away from that at that moment.

And so I feel like a lot of people have a difficult time understanding that. So when you tell people that you are not going to go to treatment they don't really know what to say. Yeah. Have you had many. Situations with family or friends strangers and how they react.

Yeah I mean that's something that continually comes up. So we put the paws on treatment and we still put the paws on treatment. We haven't really done anything about it. And instead we really try to work on ourselves and on our relationship with each other. And also just figure out I mean honestly do we want to be married to each other. I mean we got married to have a family. So what does this mean now. And so explaining that to other people has been challenging recently in fact we had recently told one of our really good family friends that we were maybe thinking kind of about adoption and immediately what they said was Oh that's so great honey you know you'll

finally know what it's like to be a parent you know. I know you guys think you're great dog parents but to parents a kid it's just something totally different. And we came we came home and Kevin was like I know she means well but gosh that really hurt. And so those comments still really hurt in lots of different ways. Being the oldest of children on both sides of the family I mean my brother is 12. He comes up with us he has like little getaways in lots of ways we feel like we're raising him especially with my parents being older we know that we're going to be involved in his lives very differently when they get older as well.

And my husband's also a guardian of one of my cousins who has special needs. And so we're also being parents in different ways. And so sometimes it gets difficult to kind of translate the ways in which parenting is not always visible but alternative parenting really does exist. You mentioned the word treatment and having an issue with.

Foregoing treatment what's part of that word that doesn't sit well with you. Yeah.

I'm I'm not anti treatment and I think I said that a little bit. I mean and neither is my husband. I think for us more so a lot of the narratives around infertility are focused around infertility treatment what treatment people did how people went through and really struggled tried to beat their infertility in lots of different ways. And for us I think that does a disservice to really treating the other issues that kind of surround the experience of infertility itself. We really felt like our marriage had to be a lot stronger and we actually kind of thought it was a good thing not to necessarily be able to get pregnant right away because if we brought a kid into

everything it might have just collapsed some things instead of gave us a chance to really work on what we wanted and build a new foundation. But I think treatment also has some connotations where when we go in we do legislation there's a lot of legislation around treatment and advocating for treatment and while that's great and that work needs to be done sometimes it doesn't really make space or options for other sources of resolving your infertility. So the idea that you can choose being childfree and that's a valid and legitimate choice that should be recognized or adoption or surrogacy or other forms of family building.

So during this time of not going to treatment you kind of found it as a time to rediscover yourself and to understand now where you are going with your life. What was that like.

Yeah. So like I said we stopped me so kind of stops were like weird still pods kind of limbo phase.

But we decided to work on our careers and kind of go full forward on that. So I actually ended up enrolling in graduate school and my first initial idea was that I was going to go and learn how to be a teacher and teach writing at a college level. So when I got my master's and during that time my whole plan was kind of like to secretly still get pregnant like I still didn't believe that I couldn't get pregnant so I was just going to go for it without you know thinking about it like that. Two years passed and I was still not pregnant. And then there was this

option. What do we do. Should we just stop now. Maybe we can go and do treatment and you can I can teach or do I do something else. And around this time I was starting to do a lot of reading. I was in a queer like Barry Tepic class and I was making a lot of connections between the ways in which your body kind of becomes reoriented. There's a lot of re-orientation scholarship to clear scholarship and the ways in which I felt my own body and my own sexuality be even be re-oriented because of my infertility and because of that I decided maybe I want to continue this and think a little bit more about

other ways that people are composing new meanings for their bodies through infertility experiences. So I decided to enroll and get my Ph.D. doing something around what I was trying to call rhetoric's of infertility which took me a while to figure out. But we'll get to that part later I'm sure. Yeah.

And then so during this time me you and your husband were also trying to look for a community like a support group for families and couples in that area.

Yeah. So that was part of taking this break was to not figure out how to fix us but to figure out how to build the community and fix this marriage that we had together. So we decided there wasn't a support group in our area to run a couple support group. Now this is. Kind of Different. More support groups the one that lives to an also ran. We're mainly focused towards women but we really wanted a space where we can meet and network other people and to really understand what they are choosing how they are going through different options and kind of as a way to figure out maybe what to do. So we started it and it was great couples

came out. We developed great friendships with them but slowly it got to be a little bit of a challenge because most will be doing treatment and then it was kind of awkward to figure out how I could be a leader of a group of someone who never did treatment herself. So it was a little bit difficult and a little bit of a challenge but we got through it by kind of networking and allowing other people to come in and talk to that group.

And then so what brought you and your husband then to go to Washington.

Yeah that was a lot of what brought us to Washington is that I felt like we were running this group and we needed to figure out how it is that we could connect them to other people who had similar stories because we didn't have those stories.

So we decided that we would go and try and figure out if there were other people that people in our group could talk to.

And so that's how we kind of ended up in D.C. everybody. So you guys met in D.C. at Advocacy Day for the day. So tell me about that.

Yes. So I traveled with a friend of mine from my support group and I had heard rumors about Kevin Imrie and these people on the west side of Michigan who were running this group. But I didn't know that they were going to be AVCs it or not. And it turned out that they were. And we all met up and I pretty quickly connected with Maria. We seemed to have a lot in common talking. We realized that we at one point in our infertility journey is both like chopped up all of our hair and I mean like I shaved my head. I it was part of him the impressive grieving the loss of my sister and I just felt like I

needed some outside present like again a visual representation that I had changed and I was different and it was a theme for Maria and in some our way so we connected on that and the fact that we were both using creative outlets for our infertility journeys. And it was really pretty incredible that we met up in D.C..

Yeah. And when I met this oh that's Mike doesn't like me. When I met Liz I was really like I said looking for someone to kind of be a support system for me.

I have been a support leader yourself lots of times you think oh they don't need their own support systems. But I really connected with Liz with everything she was going through with running her own support groups and then through all the creative outlets that she was exploring through art. I was doing it through creative writing that we just kind of clicked. So this was around the same time that you had your art exhibition back in Michigan.

And you after advocacy day there was a little bit of time you actually were able to get there and you got to see this artwork. What what kept you guys coming back to each other like what kept you guys wanting to do more.

I mean so I really enjoyed advocacy day. But I was kind of more curious after leaving there to learn more about who this girl was in Jackson Michigan which if you don't really know Jackson Michigan it's like a place you drive through to either go to Detroit or go to Lansing you don't really stop in Jackson. It's not really a go to location. So what you're going to be whole there is this person doing is a huge art exhibit featuring like over 50 pieces of art and stories that she collected while like mourning the loss of her failed cycles and field treatment. So

what basically happened is that at that same time I decided finally by the date the last last day I was going to go to that exhibit. So it's about like a two hour drive for me so I scheduled it in and then I decided OK well then I should maybe try and also meet with her. So I was made at like at about four o'clock. The exhibit closed at 5:00 was totally blown away totally. And then I think around 5:30 or so I went to meet Liz for coffee to see and actually have her participate in an interview that I was doing as part of an oral history methodology class tied

to my Ph.D. program and she'll take it from there. So we meet for coffee and Marie was pretty much like Well where do you do now the exhibits over and I was like yeah I know that it's over and I really feel like it was effective in not only like my main goal at first was educating my community and bringing awareness my community but it was really amazing about the experience with the way that people who have.

Infertility are dealing with infertility use the exhibit whether they participated as an artist or as a person who was interviewed or not use the exhibit as a way to talk to their families about the experiences of infertility. So I was really amazed by that. I don't know why that should have made sense to me I guess but it was not at all clear.

So I said to her I don't know like it seems like this is a really great thing and I'd like to continue doing it but I don't really know how. But it was just lucky that Marie at the exact same time was wanting to continue or start actually developing a methodology for collecting oral history. And what would this look like. And so we were like OK well maybe this is something we can do together. So Maria was basically at that point like I'm going to make this the topic of my dissertation and we can work together on this. And it seemed like a good fit. So we just started to do it. So now how did you take. That.

Conversation and turned it into an organization that has essentially grown in scope and taking it out of Michigan. I'm going to travel.

Yes so I think actually during that oh god that interview I'm not going to look at you. I asked the question. Something about diversity. And do you remember what I asked.

She didn't even have to say it. She looked at me and she said well what about.

And I said diversity because the first exhibit was very much what we hear and see in the media. A lot of times not so much now but definitely you know five or six years ago was you know the heterosexual white couple or the women who waited too long in quotes to start or start her family which is also a term I hate because I think a family of two is a family.

But we just were talking about that and they said issues like you should just go to California and I said yeah why don't I just go to California. So I decided to go to California. And it happens to be that resolve has. They have these walks of hope that are fundraising walks to raise money for infertility. So I made arrangements to go out to California and spent about 10 days between Northern and have other northern and southern California collecting stories and a little pop up exhibit at the walk. And it was a really great experience.

Yeah and when she came back I said so how was it at this time we were meeting like in a dorm cafeteria. After I was done teaching and she was on from work and she said it was great. Like I met so many people they had such great stories. I want to go back and I said that's great. But we have no money right now. So what happened is that we've actually found a medical humanities conference that was in Iowa and we decided to go and kind of bring the exhibit there and share some stories. And that was a great kind of moment where we could figure out a way that I could wrap that into my dissertation research and that could

also be another way that that project could continue exhibiting and sharing stories.

So now this has grown tremendously and you guys have been doing it for the last couple of years and how I met the two of you was even I had heard about it because you brought this exhibit to Seattle and I was at a conference in Vancouver and had heard about this and I was like What am I doing I need to go check this out.

And I drove down left the conference a day early which I would do anyway acupuncture conferences are not my thing. And I drove down just to see and check it out. And you guys are really.

Essentially given birth to something. And I feel like that's kind of a weird thing to say but at the same time like you guys have been trying to conceive for so long and you kind of did. One of the interesting questions that always comes to my mind just like how do your husbands feel about that.

Yes. So we definitely feel like this is something that we can see. You know we can't create a baby but we created our baby nonprofit. We're co-parenting our baby nonprofit. So that's definitely been something that's been amazing for us because we have this really close friendship out of this and we work so closely together and it's been amazing for us.

Yeah I mean Lisbon's and I are sometimes just like can you imagine like not knowing each other and immediately we're like no there's no way we're totally brought together and going through our experiences together has been invaluable. But that does. Create not problems but just tension sometimes with husbands because basically we're here because of them too. I mean our infertility. Our infertility experiences aren't just because of us. They're kind of experiences in some ways. And so it's always kind of fun to say hey

we're going to go to Philadelphia now just loads and I can do this podcast.

See I literally I just moved yesterday and I said See maybe you can come back my office and I just got a text that he did that so he's been a great supportive husband Liz's birth is a very great supportive husband as well. But you know we just try to make sure we can bring him once in a while.

We always invite them we always invite them straight but they are very supportive and we can do it without them. There's no way we could do this and it's been so important to our healing. I feel like this without this. I honestly don't know if I would still be married or still be at all coping because it's been that important to me. One of the things we talked about earlier was the word treatment and I feel like there are things about the words that we use around infertility like it not only just struggle but like finding success or battling or like the same thing with cancer these days where suddenly how strong you fight or how strong you battle cancer is going to

have a direct correlation to whether or not you survive and it just doesn't seem to add up in my mind and it just seems wrong.

Given where the two of you are now. Like how does that make you guys feel.

Yeah I think I used to use those words a lot too. But dealing with infertility has really made me think about the words that we use and how we choose to use them. And that's something we're always very careful of and mindful of in the act in the organization. Is that the word we use to matter even something as simple as embryo adoption versus embryo donation. And there are people that use it both ways for different reasons but for us it's very important that we use donation versus adoption for a variety of reasons legislative but also just the idea of redefining success. Just.

To say we know you just because you choose another path. Doesn't mean you give I think a lot of times we hear those words you know oh don't stop biting don't give up. And it's really OK to do that. You know sometimes we have. Physical or financial or emotional limitations that don't allow us to reach the initial goal that we had. And that's completely devastating in so many ways. But it's not the only way to find success after infertility is you know having a baby isn't the only way. So we're really interested in looking at the ways that we can redefine

success in successful outcomes of infertility and also share those with with others.

I think it's a really unique experience. You both have with the support group that you have but you both have been a part of the arts organization and just all the stories and the people that you meet. And I'm curious if there's ever been an issue or a moment of something that you've that has changed your mind. Like after talking to someone after seeing one of their art pieces has any of those moments influenced a change in a decision or a change.

Yeah not so much a total change in decision but one of the most things is that we've collected has been the story of a transgender who essentially was preparing to transition from female to male and went to the doctor's appointment that was supposed to be his first appointment to start testosterone injections. So he was supposed to start that day transitioning and was super excited about it and had done so much work to get to that point. And he sat down in the chair and the nurse kind of like nonchalantly handed him a

brochure and said Oh you might want to think about fertility and I like having some eggs frozen before you do this like I'm supposed to get the first injection. Like now I can't. So it to us that was just incredible that no one brought that up to him until that moment. And he ended up choosing to delay starting testosterone in order to have the opportunity to free the male so that if one day he decided he would like to present potentially be a genetic parent he could have that opportunity. And so we got to know Cole and his family

a couple of years ago and what was really also incredible. His story is that his parents dealt with infertility and it took them a really long time to find him. They actually adopted him as a private domestic adoption and just spending time with them and hearing both of their stories that really hit home to us. The reason why we do this. You know it affects so many people in so many different ways and it's so important that these stories are told that we don't hear as often because. If we don't tell them who is. And I know you know you were telling them and there are other people telling them but it's so important that those become the norm and not just you know the

unusual story that we hear. So. Kind of coming back around to a close you guys have.

A couple of options ahead of you in terms of your path to parenthood or your path to not Parenthood which is now your choice. What are what are your obstacles like what are the things that are kind of in your way and with helping you make decisions about what to do next. Yeah I think.

The path not to parenthood is a little bit difficult in terms of that that life choices and always supported or always easily acceptable.

And I think there's some decisions that we're trying to figure out with that but also the path not to parenthood is also exciting I think for Elizabeth tonight as well because it's a chance to really continue this project which we really do feel like we're co-parenting and developing and constantly growing. So it's a different choice for parents. I would say and then also on the other hand though choosing Parenthood also comes at a cost with this project as well and figuring out how it is that we can continue traveling with if we do have a child with us or what that means. On top of the additional stresses we have between the project

and then the child and then our husbands as well. How do we balance all that. I think to just continue a life choices.

I would say that the same I think that there's a lot of stigma still around people who move on especially who work to don't have children especially those who tried. And you know supposedly really wanted it and they give up again. Choose another path. People it's much better. But I think that that's that's. Although I'm comfortable with that for my family. But I feel like I kind of have age against me at this point too I mean to be 40 in February. And I you know 10 years ago would have thought it would be completely ridiculous to try to have a baby at 40. I'll be honest like and maybe in 10 years I would think that at 50 it's ok where

now I'm like no I don't want that for myself. And I think it's great when people do that. If that's right for them but it's certainly not right for me. So I'm feeling the pressure of time now and making a decision about what to do. And what does that look like. You know for for myself for my my family of two home for my art of infertility family not only Marie and Kevin but all of the extended family that we've made over time it's been really incredible and I can't imagine my life any different way. And a friend of mine said recently like talking about her baby like oh it's fine it's all going to be worth it when it's over. And I felt like it's not pretty.

It really is already worth it. Like I I wouldn't change it. And I already feel like either way whether I move forward and give treatment warm or try or we move along to adoption. I feel like I'll be ok either way. There are pros and cons to both and I think we'll find find our way.

So I normally like to end every interview with asking whoever we are speaking to. If you could link in three to five words just kind of recap.

The journey that you've had. How would you explain we've been through.

So I only have one word and it would be real re-orientation. I had to really reorient myself to happiness and what happiness is for myself. Well the test that I was really unhappy for a while like when I was first going through infertility and actually just accepting that maybe I'm just going to be infertile and that's that.

And that's going to be my body and I'll never experience pregnancy. And that's that's just the path that's laid for it. I was really angry. I was upset and I was not a happy person and my marriage wasn't happy because of that. And eventually I think after meeting people maybe people at advocacy day meeting people through my infertility support group meeting Liz meaning the people to the project. I was able to kind of reorient myself to a new definition of happiness and really be ok with the idea that maybe I won't have children maybe I will. But right now I'm happy. And that's what really matters.

And I miraculously came up with exactly three words and they are access to care. I think that that is the most important thing. It is so much harder. Infertility forces you to make a million decisions every step of the way. There's always something to decide. And. If you don't have the access to care that you need to treat your infertility those decisions are made so much harder. It's not just financial it's emotional it's physical. There's still the ways that people run out of resources before they get to a point where they are able to have the family that they want or even just if they

move forward without effort without growing their family just being so exhausted and completely drained by the time it's over. But if we have access to care. To make the decisions that are right for us that are informed by our doctors that are recommended. If we can actually have that access to care by having insurance coverage or whatever it is that makes that possible. I think that the journey will be so much easier for everyone. I mean someone with with coverage can go to a clinic and have a baby a year old. A year later where it doesn't always happen of course but that's a

possibility. And without that access to care you're looking at years of years upon years essentially. I met a woman the other day who just broke down who said you know we've been trying for so long and we can't even afford to get tested to find out what's going on going on. So I really feel like that's those are the three words that I would. Say.

Thank you guys so much. Wonderful.

So I want to thank Elizabeth and Maria for coming all this way just to be here. I have so many people to thank for getting this podcast started. I want to thank them. I want to thank Laura for. joining and being on this journey with me. And I want to thank my parents and my family and my friends who are up at the front here who literally I just would not be here without them and they have been so tremendously supportive and have listened and you know one of the reasons that I was sitting in a coffee shop I was telling a Joe’s in Rittenhouse Square the other day and David walks up to me and he's got his headphones in and he's like Steven you're in my ear as of right

now. And like aside from the fact that David is Canadian and is probably more advanced than most guys like he's that he's a person I never thought I would reach with talking about this and trying to share these stories. And that's so exactly why I'm here and what I'm trying to do. So I just want to say thank you thank you to my staff who are with me all the way and who help me and to all of my patients and to all of the people who have been willing to let us interview them and are willing to share their stories because it is their stories and it's that's what I'm really trying to get out as much as I can. All right thank you guys.

Thanks again to Elizabeth and Maria for sharing their story. If you'd like to find out more information on their exhibitions you can find them online at artofinfertility.org. And if you want to see one of their exhibitions we'll be coming to Philadelphia for the month of November. It's the old city Jewish art center. Check out our Web site at waitingforbabies.com or waiting for babies on Facebook. For more info. To Lauren and Caitlin from Team624communications for providing us with an amazing space we have so much fun doing this live and seeing everyone's reactions to this story. If you have a story you want to tell would be interested in being interviewed on stage in your town.

Reach out to us via the contact form on our site and we'll bring the show to you. We'll be back in a few weeks with another interview into the human side of the world and infertility. Till then I'm Steven Mavros. See you next time.

This audio features the songs "Bayou Farewell" by US Army Blues and "California Lullaby (Instrumental Version)" by Josh Woodward, all available under a Creative Commons Attribution license.

What happens when infertility stops being about getting pregnant and starts being about actually having a healthy baby?  Jen and Jeff seemed to have the getting pregnant part down. That second part, though, never seemed to go right. Once they finally found out what was going wrong, and even had a possible solution, the road ahead was still long and unsure. 

TRANSCRIPT

(transcripts are for purposes of searching and are approximations at best)

Hi it’s Steven. If you happen to live in the Philadelphia area or you love us enough that you’d travel from anywhere waiting for babies is doing a live interview event and launch party at We Work in Northern Liberties on Wednesday August 9th. I have some very special guests I’ll be interviewing and there will be drinks and people I've worked with throughout the years and I promise it'll be a fun time. Tickets are available on the site at waitingforbabies.com.

OK back to our regularly scheduled programming. I love the buzz at the beginning.

Hi I'm Steven Mavros and this is waiting for babies.

On our last interlude. We discussed recurrent pregnancy loss what that means and what some of the paths forward are and sometimes getting pregnant isn't the hard part. But going from a positive test to holding an actual child in your arms is. Our story today comes from Jennifer and Jeff R who started down their path to conception exactly the way they hoped for after they got married and decided to give the whole baby making thing a try. Oh and before we jump in just a quick note about the audio here. I often do these interviews at people's homes and remember this is a pod cast about for two these. So if a child is in the story at some point you're bound to hear lots of funny background noises from toys cartoons. Or

other things that entertain those children. It's just one of the hazards of the trade. OK. Back to Jim and Jeff. First trying to have a baby right after they got married.

Let's see if that works. Kind of situation and it were the first time.

We were both freaking out cuz we didn't have a house yet living in a small condo and then you're probably just 10 minutes ago.

So initially everything looked good but at 11 weeks when she had our first appointment with an Obie they found the fetus had stopped growing way back at the six week mark. And quickly after she had a miscarriage doctor side one in four women have.

Chalked it up to that. And we just were like wow. I don't want to talk about that. And I think a lot of women going through this feel.

Embarrassed shame it's your fault. Even though it's nothing we did most. I feel like most women that's how they feel.

Had you gotten pregnant prior to when you were trying. No. No. It literally like literally every day. Unfortunately the day didn't work out because I was like That's great. What are people talking about. Little did I know.

Everyone handles a miscarriage differently and Jen took perhaps longer than a lot of others I've talked to before trying again. Probably about a year.

Until we started trying.

When Jen says it took a year to recover before trying again. She even meant going back on birth control because she wasn't ready to deal with the possibility of a miscarriage happening again for the whole year. Now during her time off she tried to think of all the things that had happened to her in our life that might have an effect on her fertility. And one of them was Graves disease.

So I was always worried maybe that would fax me trying to have kids one day. But again doctors my dad my whole life. No no no you'll be fine. And then when I got the radioactive iodine I don't know if you know the process it's. Crazy.

Go you're in hospital in the nuclear Department. And like an astronaut comes in full suit with a can opener that smoke comes out. Tongs.

And it was so quick how everything went crazy with my thyroid. I'm twenty two. Oh my God I'm taking this pill. That's from an astronaut. And then after their guidance was wash the shower out. When you're done flush the toilet twice. You cannot be around pregnant women can't be around children treated.

There are some that you just don't want me but I'm I don't know if I might go out with need to get our little purple halo comes off this time at her 11 week initial ultrasound.

Things look good and on track right around this time it's typical for an O.B. to do a preliminary screening for genetic disorders. The screening often gives you the odds of the likelihood of a genetic abnormality to occur. When the results came back. The risks were a little higher than usual. And then I had my first ultrasound.

At 11 weeks where they do the first trimester screening. They measured the neck. They do the bloodwork. Everything looked good there.

And then they called Two days later and say your risk is one in eight. So.

Scheduled CVS like the following week. And what was that like. It was shocking.

So describe CVS to. Do you know what that is that is where they go in to the lining of the placenta and you take out cells.

Send them for testing. It is like O.B. appointment like Pop-Pop.

Maybe 10 seconds longer.

That was it Doctor was amazing like he just he's one of those people I won't forget. He was amazing because I was like trembling so scared. And then.

A week later it was confirmed. So then we made the decision to do what we needed to do. What was best for us. And people may judge. I would never judge but I don't regret we don't ever regret. That. For us. Just because. That's.

It was best for us. So if you didn't catch her meaning the test came back positive for a genetic abnormality and after meeting with a genetic counselor they decided to terminate the pregnancy. They were told ahead of time that even if they were able to carry to term given there was only a 50/50 chance of having a successful birth the baby would either have significant developmental disorders and or chronic health issues. So they decided to end it. Needless to say this was not an easy decision for them to make given they had already suffered a miscarriage that rocked them to their core knowing they had to choose to end the pregnancy was awful. But it's one they realize they don't regret the procedure and its effects though were a

bit surreal when you come home and you're like you're like it's over.

I can't believe I was pregnant yesterday. I was pregnant yesterday. And now you're like my milk came in was because it got really I was 15 and a half weeks.

So you know your milk wouldn't come in your body thinks you had a baby. So it's like now I'm home. My boobs are like bowling balls and I want to just crawl in a hole. I was. Googling like every everything cabbage that works cold cabbage leaves.

So I was just like walking around like in your in my bra. Yup.

And then I have you know know I have a job.

I'm I'm working and I'm like I'm going to be off for a week. Thank God. Boss is supportive you know that was great. But. I absolutely carry with me every day even now every day.

So after a really hard decision and sharing it with some friends Jeff was starting to think that two problematic pregnancies wasn't just bad luck.

You know the challenges of trying to have a child right. You know you can have miscarriages and that can happen. So the first time it really took to me you know look at is OK well will try again and we'll get through it.

You know it's funny when you go funny but ironic when you go through these things and you know you talk to other friends and they mentioned that to you. Oh yeah we had that probably never brought up before but then it comes out you know once you express to them something that you've had to go through then they bring it up to you like oh you know we had one we had to and you oh I did you know like it would be nice to share that but I've said I'm going to handle matters privately differently you know I'm a little different in terms of how I manage those things and more expressive.

But then you find out OK what you went through before so then it makes you feel more confident. Well then you know we will get to where we want to go in terms of having a baby so you know I guess after that point you know I figured OK well it is time again. We should be OK. So then when things kind of didn't turn around then you start to get you know more concerned worried about this isn't the path that others have you know gone down you know they've been able to resolve able to get through it.

You know this is something different is going on you're not in I started you know to get a little worried and concerned.

It was like is is something that you know Jen too was getting an inclination that something wasn't right and had an inkling as to what might be going wrong. I found this group on Yahoo where it was about balance translocations and I was like. This.

Story sound like mine but. But. I said to myself. I guarantee you it's me. I'm going to have the genetic issue. And sure enough I was like let's go get tested. Went to the lab got it and came back that I had the balanced translocation OK.

Unless you're a geneticist we're going to need to take a quick pause here and go over what she's referring to.

And I intensely apologize for bringing biology 101 back to your lives but here goes. So inside the nucleus of human cells we have our basic genetic material and it's comprised of 46 chromosomes 23 pairs. In people with balance translocation they're born were two of the chromosomes have broken off and swapped places so they have a full set of 46 and are usually healthy.

It's just that two parts are in the wrong place. So when those cells divide in half and join with another set from the partner for reproduction remembering the man provides 23 and the woman provides 23 those translocated chromosomes can come together and into vitam properly. How this manifests is that sometimes things combine and divide well and a healthy pregnancy is possible and sometimes they don't. And this can lead to miscarriage or birth getting pregnant naturally as Jen and Jeff were every time was basically a coin toss as to whether their chromosomes would line up well or would go astray. So this was daunting I thought and there was a silver lining in that they had something that many people

struggling with fertility don't always get a reason. One of the hard parts though was that it wasn't an easy one to discuss as it went over people's heads. So it was a little bit isolating.

I want to know what it meant either someone brought it to me. If my friends came and said Oh I have a balanced translocation. What good is that. Oh crumbs. I'm trying to explain to family. No. Friends No. No. They're like why. You mean chromosome and they're stuck together and. Well how does that affect you having a baby. And I don't get it. So at one point I was just like I'm in this chapter and just saying it's I have a genetic I carry something genetic. So I said that.

I rather. Oh yeah.

Is that like hemophilia because I want to know is he doing it right now. Right right right right right. Yes. Again you can't blame people for not. Jumping into a book and being like let's read about Jen's issue. I want to learn more early. OK.

So that was two. So you took a year off. Yes the first mistake. Right. Knowing that something was like wrong per se.

Did that change that equation the next time around or did you still feel like you needed a lot of time to recover. Not as long because I felt.

Armed with empowered and prepared. And if you get pregnant again this is what we'll do differently.

We will get on early ultrasounds. We will schedule CVS at 11 weeks right on Tuesday.

So you guys get pregnant so fast. Were you like in between like you've been two and three at that point. Was like had sex life like. Yes. Was it remotely fun any more. Not so much.

Yeah because you're worried you're worried. You're just like wouldn't it. Oh my God. Let's try not to get pregnant. So you live in that zone until.

Six months go by and we're like hey what's relax a little bit.

OK. So we're going to try. We're on with information. We know what to expect. I find out the day after an Eagles game that I'm pregnant. Quickly again my first or second first time so you know you can do one thing really well if they're pregnant.

Which is a curse and a blessing. You know if I was healthy we would probably have four kids for now which.

I'd probably be dead.

Early ultrasound. Eight weeks. Heartbeat. Good. That's one check. CVS scheduled 10 weeks old don't sound all that good about appointment.

No heartbeat. This one knocked us on her ass. The worst. I don't know what it was about that appointment but together we were together. I was nervous to go to CVS even though I had had it before. And I was in the waiting room and I said to Jeff these people are our states that work in these high risk places for having to give bad and bad news.

For no one but is well.

He's going to get this.

And I said I can't imagine having to deliver bad news like. And then 20 minutes later here we are. Are those people.

I call my mom immediately. She's waiting by the phone. And I'm just like no. And I hung up and that was it like.

And I could just hear her scream like he lost that which no one ever wants to see her husband or spouse partner whatever is next. When his mom called he was on the phone and I was like I am we can't we can't keep doing this like this is it. This is it. We're done. We're done. I was like this.

It might just be us it could just be us and that's fine. We got married because we loved each other and we did get married to have kids Solum.

So after three intensely difficult miscarriages John and Jeff were given an option they hadn't thought of for IVF. Now remember to talk about the genetics of her balanced translocation. With Jen's issue. Every time she got pregnant was a roll of the dice. There was a chance the embryo formed would be genetically good and there was a chance that it was. Now so far she had had some pretty bad dice rolls. Now here's where IVF comes in. So if you combine IVF with PGS or preimplantation genetic screening you can actually weed out the embryos that have the abnormal genetic material and only use the ones that don't. Theory if that leads to a pregnancy. Essentially the problem is solved and the risk of

miscarriage should decrease substantially. Jan and Jeff had different reactions to this possibility. One thing they were both taken aback by was the cost. IVF is already an expensive endeavor with testing procedures medications costing anywhere from 10 to $20,000. PGS that genetic testing can add more thousands of dollars to the costs in the beginning. If the costs could be sorted Jan was pretty sure she was on board. But Jeff was a little hesitant. It just wasn't a part of.

My beliefs. My life plan you know kind of what I thought it would be. Right. We talked about you know at first because we didn't know what was going on and we said you know it we'll be happy. There's plenty of couples we know we have plenty but there's you know we'll be happy. But I knew she was saying it but she wasn't me. You know I'm 26 and so I had to come around and look I mean I wanted a family more than anybody else.

It wasn't. It was one. It's just that you know I always thought hey you know nature has a plan for things you know in the natural world. But then again you know I started thinking Look I'm in the medical community.

I use a lot. I sell signs to help people get better and so maybe you know in this case it does make sense. So I just kind to do like deep thinking on my own.

And despite you know what you know I believe Mother Nature had planned for for people and individuals you know people individuals don't plan on getting cancer either. And we overcome that. So you know I kind of had a look at things through two lenses instead of my legs and I started thinking about things that way. And so this is just another way that you know modern science and people have created to enable those that can. Do that. So that's the way I look at it. So it just took time.

You know how did you convince them that that moving for him was a good idea. Maybe when our insurance covered it when it went from 30000 to like a thousand.

And it is really 30 that was what they were probably with the PGD.

Yeah. And that’s which was the hardest part of it all was the insurance wasn't the needles. It was getting to the appointments.

It was dealing with insurance because because I got rejected twice. So I take this like my page.

It was like Jerry Maguire. Right. Let it all out there. Literally someone called me like my dad my father clock. They're like we're so sorry. It took you got rejected. It is going through. Your meds are going through kids close site.

Oh my God.

Shocked. I was crying. She felt so bad. She was like you don't need any of this. You have a condition.

It's all good. I was big on the facts of their life. What did you do. They were like no one gets rejected twice and then gets approved. It was like This is my middle name and what I am I do not give up. Right. And I will be annoying as shit. I went to drove to the CEO's house and been like Clark Griswald. Really.

So with the insurance sorted they moved ahead. Let me just do a quick IVF refresher. So basically women normally produce one follicle or egg every month but with IVF women are given injectable hormones that cause their ovaries to produce as many eggs as they can get going at one time with the goal of retrieving all the mature. This was new territory for Jenna's getting pregnant had never been an issue before so she never needed this type of stimulation and this is the first time you've ever been on hormones because up until this point pregnancy wasn't a first time first time and I will say it wasn't that bad.

I think I had one meltdown which I think is pretty good. I was like take the drugs. I'm done. Call the Doctor. I'm done laying on the floor. I don't even know. It could have been. A fly in the house. I have no idea. Like the wasn't huge. It was just I had had enough. What did he do. He's very calm cool collected like I am that I am because I'm like I could fly off.

And my son didn't have hormones and needles going into him every other day.

Right. And you know get done and stuff like that stuff doesn't leave you ever. It gets buried in the back. But it's always there. So I'm still recovering from that and now it's you know.

shots shots shots I'm going to play you.

Please please please. I can't wait. We took a break for a dance party. Why are you using performing and now you're drunk.

What was it like doing that first shot. Scary scary.

It was because I think it didn't go great.

There was blood. Had a second opinion on it.

She remembers that it was yeah yeah. There was blood. I know it was a lot of it. Some of it was you know we didn't ice long enough so that the tissue was warmer than it needed to be. So there was more blood there to come out. So that was probably why it was all learning you know to figure out how to get through but that. I mean once that was the funny thing about this whole process was you know we learned what we needed to do and got expert. And you know it was like we never got scared off by something it was like OK we got to you next time. And I was like I said longer than do this and then you know we got better and better at it you know.

So it's really amazing what you can not only get used to but then actually come to make normal and that's a challenge you can even improve that. Now next up in the IVF process was the egg retrieval which is done at the clinic under a form of anesthesia called conscious sedation a fancy term for a type of mild anesthesia where as the term says you're both conscious but sedated enough you don't remember what happened. Grogginess between that station and waking up often leads to funny moments at the fertility clinic.

So walk through retrieval for us for retrieval is we go in reverse go. He has to do a sample which is stressful because your wife's been put to sleep in five minutes and they're like oh go in a room you know. So I wake up from sedation and all I can say is did you go.

He was like that you should.

I was struck and then I asked how many eggs were good.

So sad because it was not if I was in my right mind I would have never screamed in front of other people.

There was like nurses laughing I'm sure I'm not the first. Right. Right.

So you're so you're sitting in the waiting room you're freaked out because you have to go do that. Yeah. And how was he attentive to you and then you just kind of like.

It's all good it's all good just like what is that world that you live in. It's like Willy Wonka. Like what world is that. That's great. That's why we work out. Because he is like that. And I'm the crazy person.

Now as I've said before fertility treatments are so women focus not logistically and this isn't to take away from their clear emotional role but for the purpose of IVF the man's job is a tad easier as all they need is some sperm which are a lot easier to collect. Next hour.

I know for a guy it's a very like that day when you go in for the big like retrieval you're just totally different.

He's about to go through was it. Were you nervous about doing it before. Oh yeah. Did you like prep in some way or think about how down the line. Yeah I try to just focus everything on.

We're doing this for her.

You know yeah I mean I try to just not really I just really think too much about it. OK we got a job to do tomorrow. We got to go in and you know agenda jobs a lot harder than my job.

So don't mess this up. But not think about it don't necessarily just you know just go in and just you know but you know it's actually you know quite nerve wracking because everyone's prepared.

Right. The surgeons are preparing the change preparing to go through.

I mean everyone's job is a lot more local in a way you know. I mean when I have to do and so you you don't want to be the cog in the wheel that messes everything up.

So the first few days after retrieval can be particularly difficult for people going through it as there are constant updates on the status of the embryo. When Jen's eggs were retrieved they were taken into the embryology lab for fertilization. That depending on what was determined beforehand the eggs are fertilized by putting them together with the sperm sample that was given were more commonly now the embryologist will go through the sample find the best looking sperm they can and inject it directly into the egg to fertilize it. This is referred to as ICSI or intra-cytoplasmic sperm injection. Once the eggs are fertilized and become embryos they start to divide and grow even under the best circumstances in healthy women who do well with stimulation. Not all eggs retrieved are mature and not all eggs fertilized normally and not all embryos grow properly. So it was IVF patients are getting daily updates from the embryologist the number of viable embryos can dwindle quickly and then circumstance was even more precarious than most as she needed to still genetically test the embryos. So probably the number she would have left once that was done would be less still OK.

They were treated 11 x like 8 or four. So that was bad news because you lose three.

And then they call you every day with the up until they're fertilized six fertilized at 11 and four or set for PGD now Jenna's saying PGD but she actually had PGS.

PGD is just a different sometimes more complicated genetic test for finding different mutations. So it's easily confused. So how do they do. Back when Jen was doing this a few years ago. The embryologist would let the embryos divide for about three days going from a single cell to about eight cells to do that. Yes. They need to remove one of those cells and send it off to a lab for testing. The thought of this is still amazing to me that we have the technology to take these microscopic cells be able to pluck just one of them off without destroying the whole thing. So they sent that one cell off for testing and the embryos are now at seven cells instead of eight. They go back into

the incubator to hopefully keep growing and divide. Two days later which is when the test results are due back. They can put aside the abnormal embryos and choose a good one to put back in to Jennifer. We refer to this as embryo transfer. So five days after retrieval. Jen and Jeff are headed back to the clinic for the transfer and anxiously waiting to know if any of the embryos have made it through the gauntlet that is genetic testing and they get a call from the embryologist.

We got we just got them back from the lab.

We lost two more of the. But they are saying no signal. And I was like look I turn signal. What's happening. So I said with no signal she's just like they're alive and well but there's no signal.

She's like I have no idea. So she said we can tell them and start over.

Put them in any way without knowing the office.

When are you in the parking lot at the mall crying I'm fed up you know that's when I was like I've had enough or freeze them. Wait like five days for the results. Well I'm not going to drive them out because that's like what I do with my trash.

I'm not going to put them in to end up in a termination situation again when I just went through IVF for a purpose to find out to find a healthy baby.

So I said let's re-biopsy. They were doing it for free. There was no cost. That was a Sunday. Friday they call. And say one is normal.

One is not like Rocky at that point you're not out of the woods because they don't even if this thing is going to last. Freezing an embryo to me is the most amazing.

How they can do that and thaw it and it's still frightening.

So no. When you're in that when you're in the parking lot. Yeah. And then go home you're like. Was that a hard decision when she gave us our options. I was like oh my gosh. Like.

Maybe a decision on the like she's telling me and I'm telling you right now what do you like.

I was not putting them in without knowing I mean to me that's just like setting yourself up for failure again. But then we hung up the phone and I was like. So we were just going to go for a transfer.

And then I had to call your guys are on the way. I'm like because you got acupuncture right before and after.

And it was just your mind is spinning.

I've been in the same position from the other end. Many times remember I'm an acupuncturist and I specialize in doing acupuncture right before the embryo transfer. Too many times I've woken up super early just like my patients. And then our into fighting silly traffic to get to the clinic labs are all to get a frantic and sometimes subfield call from a patient telling me the transfer is not happening either because the embryos didn't make it or the genetic results weren't good. It's just devastating for them. Thankfully in this case the results were just inconclusive and they were successfully able to biopsy the embryos again freeze them without losing any. And the second test was actually

conclusive. Now just to give you a sense of timing. Jen and Jeff couldn't just put the embryo back in right away when they got the test results. There is a very specific timing to this when you're transferring embryos back in the body and in particular the uterus have to essentially be in the same stage as the age of the embryo. So in this case the embryo is now frozen at five days old. So Jan had to come off her meds get her period get put back on medications which in this case meant mostly estrogen for a few weeks followed by progesterone just to mimic the state the body would normally be in for a five day embryo to be developing and ready to implant into the wall of the uterus.

That whole process from that day in the parking lot took around five weeks. So finally the actual transfer day arrives and they have one good embryo one shot.

So they go in for their transfer and it thankfully goes smooth and easy to trade for amazing to see because they show it on the TV and it just goes through and you see like a little scar flash on the screen and he's like that's it.

And you're right. So not moving. Which I will never forget because a lot of women are like did you lay there for 20 minutes. What should I do. Like should I not. She said it's like a grain of rice instead of peanut butter. She's like that rice in a movie. I no. So I get one of those weird things you remember.

But I don't get out of bed for two days.

Not sneezing because they told you to just you know just me I'm eating the pineapple core.

There's supposedly you know enzymes and a war that's just make your environment sticky. I like reading it probably it really is a spinach socks on.

Your feet. It's like where is your doctor Google. OK. Yeah.

Dr. Google. First off as far as I know none of those things she just said have been proven to help with embryo transfer success rates. But to be fair I don't think anyone's actually studied most of them. So it's possible but I'll be a little skeptical until proven otherwise. I can't even tell you the number of things on the internet purportedly help with Transfer Day. It's like an anthropological study into superstition from Pineapple core to multiple days of strict horizontal bedrest to McDonald's French fries. Now because I know how my patients are anyone going through IVF right now is both laughing and agreement about the superstition thing. And at the same time Google searching McDonald's French fries on IVF because of somewhere on the

Internet there was some tiny research study that showed it worked. They're going to do it. It's just how it is. So now Jeff and Jan settle into that dreaded period we refer to as the two week wait. With IVF it's more like a nine day wait but it's still a time when you have no way to figure out if everything you just did and put your heart into worked or you are back to square one and have to start all over. Needless to say they were anxious.

It's exactly things Id been waiting. I mean you're just mind races in 100 different directions all the time. You know there's not really anything else you can do because you don't notice it as much as you don't want it to dominate your thoughts every day all day long. You can't help it. I mean it's something you know you've been working so hard to get there and you put so much effort and everything into so yeah it's just it's just tough. I mean there's really no other way to get around. You know you say all focus on work and you are you have to you have a daily job to do and but when you're. At night when you're home you know and you know I have a job or before you go to bed you know or when you wake up it's

sort of just you know it was just.

I want an answer you know at that point in time we did everything we possibly could. Right. And we're continuing to do so. So it's going to work and it's going to work out. And if it's not we try again. This is kind of how I'm wired. So you know what I mean.

I still fall asleep at the time like normally but I made her mad. I didn't say anything. I'm like yeah. And I'm like why. Because.

I tell you what. The confidence I had in their practice made me probably feel that way too. I mean they were just so amazing and professional and good at what they do. And I think I looked at it as OK. It just doesn't work. And boy that will stink because we've come this far. They got us this far. Who says they can't get this far again. You know I'm just like one of them that's just kind of how I think you know they try one to try you know. And it was like you get a credit to them you know. And it occurred again because she did so well do the whole thing. I knew it would be tough for her. Have to go through it again but it was the same time

like I will come this far.

And our hands are still attached we're still together and still happy so if we had to go again I know we can get here.

So it's probably resting now as you've already figured out from the noises and sometimes screams in the background.

Jen and Jeff's IVF worked and that single genetically good embryo made it all the way this time. But I want you to keep some perspective because they didn't know that at the time. Remember up until this point they'd already had three miscarriages. So in Jen's mind nothing was sure.

Did it feel different to be pregnant at that time. Like was that that fear and that that things here was their strong.

Fear was there anxiety was there. I was so sick. But I was so sick.

With the other three too. So with the PGD or PGS it's not 100 percent.

And the lab still says you should go to CVS.

I did it. Got it but I had said if anything weird came up at your first trimester screening if anything were up I would obviously get it.

But I was sick I was sick I was throwing up all day. And then one day it stopped.

Some out again and I was like wait a minute what if something is wrong. I way I missed growing up now. I want propagand. So it's all that.

I'm calling my O.B. for Doppler shift. Car come in I'll do you lunch like I said Hybris nurse. I mean these people treated me like I was gold. Even at the higher risk doctor. They were like We've heard your story.

He's like you are Jennifer. Oh my God.

I've heard your story. I was reading your chart. Like this baby is a miracle. I'm going to tell my students about this. And I was just like this is great this is great. You're like a star.

He was fine and everything was fine. And my presidency was perfect.

I had no issues. Were you worried the whole time. Yeah.

You never worried on a break when they said you have to push. I love it. I was like I'm not ready. What if he comes out and he's sick. And I've had.

A hundred ultrasounds and I'm still not convinced.

And then when he came out and I saw his face and I was like. And then I was listening because I do everything in the same room now.

The group was yelling at my husband. I go back in your corner and meet your eyes OK. He said gender like.

He just said like I was being like such a bitch. That point not when I was like pushing already but it was like OK.

You're fine. Everything was fine. Looking back on it all with some perspective after the birth of their son Jen and Jeff both had thoughts of why they wanted to share their story.

Even to this day and really I know has really sunk in about how difficult. You know it's like you know we're going to live well we can't just go through you.

You know it's not like I don't get it. And yet it's just we can't just do that. Secondly Jen doesn't work for our company anymore we had excellent insurance like all these things are going to look like down to them that way. Like I can't afford it just pay out of pocket for my insurance company doesn't do it at my home where I work. You know and you're like oh you know.

Oh yes that's right you know I mean if guys being guys and the wives would look at things differently but I don't even think so I think that's an easy question to ask because it is if it is. Yeah pretty much. You know I use I use I use blower I used before but now it's one of those things where you can of sick of the questions so you really pay. Right. It's not just that we can't just do it you know and this is why so maybe you know we stop asking.

But people have no idea oh it's like a turkey baster.

That's what I heard and like so we're not going to go there. Right. One more thing. Not her cancer. You didn't feel like educating.

I guess I was so this is by design at that point.

But for the most part you know I'll never forget going into those IVF appointments. It was like. Kendra.

No one talks. No one looks at each other. There's so many women in the reading room and they're just had you down.

You're on the phone. You're in a magazine. It's just silent. Like no other office that I have ever been to. And it's really sad. Because I think. There's that shame that comes with miscarriages infertility IVF which I felt it for sure. That's why I am always like I feel like I'm willing to tell a story because.

If someone's on the fence about IVF and they're scared of the needles I was scared to looking back now.

It was nothing. It was nothing. I mean the worst part is your husband giving you shots in ass Because you like this not what I expected marriage making babies.

And my water on my right butt cheek make sure you get it. It's like the north one to the west and he's like I got it. Their blood. It's like but it really is nothing in the grand scheme of.

It especially when you are successful I think an idea like we were.

And finally Jeff had some advice specifically for the men out there.

Number one you got to be the key supporter that you're there to get him through whatever it is they need to get through. You know do everything you can if they want you those doctors appointments you know make sure you're there or if you can't get all of them find out what the key ones are and make sure you're there because this is the most important thing you know is what they're looking for is a lot of support. And then don't feel like you know the answer to things because that's like a natural instinct of men. And. You've already. Gone to the point where you're. Addressing it with. A medical solution. Your answer work.

You know get that out of your head you know and don't feel bad about it you know because it you know that's where you are now. So come to grips with that as fast as you can and then begin the process and work together as a team.

It's like I would love to use you as an education for you.

My God my husband and I don't have this perspective and are really annoying.

I mean I love to deal with you on a day to day basis right now.

It's hard like that. You know it's one thing I give guys a lot of credit if they just don't know what to do. But you know what. And you know so many of the times they like then end up just checking out which is like so not what anyone's going for. So it's always interesting to see the other side.

I'm sorry all the guys out there. But seriously get it together.

Thanks to Jen and Jeff for telling their story and most importantly for feeding me cookies on a Spider-Man plate during the interview. It's like some people just get who I am.

Waiting for Babies is produced by me Steven Mavros with help during interviews by Laura Mullin. For those of you who live in the Philadelphia area. Wednesday August 9th is our launch party and a live interview event at We Work in Northern Liberties, where Laura and I will take the stage and do an in-person interview with Elizabeth Walker and Maria Novotny from the ART of infertility who each bring their own amazing stories of turning their struggles of infertility. Tickets are available on our website at waitingforbabies.com. Afterwards you'll be able to grab a drink and meet some of the people featured in this podcast. And I promise it'll be an entertaining evening so I'll see you. Take care.

This audio features the song "Lullaby for a Broken Circuit" by Quiet Music for Tiny Robots, "Readers, Do You Read" and "Divider" by Chris Zabriskie, "Elehyphant at Oceanflame Dawn" by Myriador, "She Lost Her Wings (Instrumental Version)" by Josh Woodward, all available under a Creative Commons Attribution license.

What happens when getting pregnant isn't the difficult part, but staying that way is? How do you hold yourself together when every miscarriage feels like you are broken in two? This is the face of recurrent pregnancy loss. We take a break from our stories to let an expert, Dr. Lora Shahine, guide us through what it means, how her center is helping patients, current research in the field, and most of all, how to find hope. 

Dr Lora Shahine's book, Not Broken: An Approachable Guide to Miscarriage and Recurrent Pregnancy Loss, is available wherever books are sold. 

From Left: Dr. Lora Shahine, Dr. Lorna Marshall, Steven Mavros, L.OM.

You can use the following links to wikipedia and other sources to find out more about:

• Kintsugi - wikipedia, youtube
• Wabi-Sabi
• Mushin
• Wu Wei

TRANSCRIPT

(transcripts are for purposes of searching and are approximations at best)

This is Waiting for Babies. I'm Steven Mavros. You may not have noticed but there is a running theme throughout the stories we've presented so far. Every one of them at some point involved a miscarriage. Each one was handled very differently universally and especially in our culture in America. They were grieved privately. Few outsiders knowing something that was possibly devastating going on in their lives. Now I want you to imagine not just enduring this once but two three and four times someone very close to me suffer through six of them. Can you even fathom that. Six of them.

Most people who are interested in having a child look at a positive pregnancy test with joy and elation. I've had patients bring me a piece stick wrapped in a tissue in their purse like they just found a gemstone and a crack in the sidewalk. But after losing a pregnancy more than once suddenly that joy becomes hesitation and a dreaded phrase in this field we refer to as cautious optimism. Ugh who wants to be cautious with their optimism. You just want to be hopeful and have no added weight to it. So even if getting pregnant for you isn't the hard part it's hard to know what to do when suddenly one miscarriage turns to two or more. And remember miscarriages are more common than most people realize.

We know so many women that have had miscarriages. One in four women will have a miscarriage. And if you have more than one miscarriage is considered recurrent pregnancy loss. But there are very few centers or providers that are really focused on this as a practice and that's what I want to focus on today.

The concept of recurrent pregnancy loss. We're going to take a quick break. From a personal fertility story and get the perspective of a physician in the field. I had the pleasure of interviewing a reproductive endocrinologist which is how we refer to a fertility specialist in the medical field. Dr. Shahine recently wrote a book whose title really struck me called not broken.

I am Dr. Lora Shahine and I practice at Pacific Northwest Fertility in Seattle. So private practice it's affiliated with the University of Washington were right down in downtown Seattle. I joined the practice in 2009 but I am originally from North Carolina so a long way from home but I'm really happy to call this home.

We I'm really touched on how some of the doctors get into this field and what their path is was like recurrent pregnancy loss something you knew you were going to get into with the time.

Honestly no. So we're kind of pregnancy loss is a part of training for reproductive technology and infertility which is a fellowship training or subspecialty training after residency. So even in medical school and then you figure out what you want to focus on. I wanted to focus on obstetrics and gynecology. I did that for four years and through that I realized I was really drawn to infertility and that field so I wanted to do that subspecialty. And because of a personal I'm not you know I it I just I was one of those people that just liked

everything in medical school. As soon as they did a rotation I was like This is what I want to do. I like surgery I like medicine. I really liked women's health and my very last rotation that I did was obstetrics and gynecology and I was like this just combines everything because it's women's health and it's surgery and it's long term care etc.. And then in residency I was just really drawn to the reproductive endocrinology department. I loved that technology. I of the people that I met. It was a really exciting time because genetic testing was really starting to come out and it was really controversial. And I just really was drawn to it.

And I like the idea of helping people at a time when they're really struggling. It's a really unique time. And infertility is a very humbling and it can affect anybody no matter what socioeconomic class you are or your background or your career. And I just really I was drawn to it.

Do you remember the first patient you had to tell that they were having a miscarriage like Do you remember what it was like in the beginning when you had what I really remember?

And I actually talk about this in the introduction in my book is how in fellowship you know we follow our own patients I would call them with their pregnancy tests. And I called this woman and I said hey you have a positive pregnancy test.

And I was so used to hearing people say like oh my gosh I'm screaming and yelling and so excited.

And it was dead silence on the other end of the phone. And she just sort of could hear this sort of deep sigh. And I was like you know hey what I thought this is good news. Oh thank you so much for calling me Dr. Shahine. For me this is really just the beginning. And she kind of hung up actually. And I really took a step back and I realized oh my goodness every time she has had a positive pregnancy test it has not ended well she'd had multiple miscarriages and it was a really humbling and eye opening experience and so that really sticks out in my mind and whenever I'm talking to people about how to care for patients with miscarriage I just warn

them that really the joy and innocence of a positive pregnancy test has really been taken away from these people. And so don't be surprised if you get an unexpected reaction and they really might want to be very guarded until they get further along and that's OK because you have to meet them where they are.

Dr. Shahene did her fertility fellowship at Stanford University working with Dr. Ruth Lathi who created a unique program back in 2007 around recurrent pregnancy loss bringing the expertise of many physicians with different specialties together around this one specific issue.

So I learned a lot being there. And then when I came up to start my practice here in 2009 really focused on just you know learning Seattle and doing really good fertility care but I realized very quickly that there wasn't anybody in the area that was really focused on recurrent pregnancy loss even though there are several reproductive endocrinologists. And I just had this unique background and I had this unique interest and so I started my own center for her parents who are here in 2011 and I've slowly watched it grow and it's been really a wonderful experience.

Now I remember recurrent pregnancy loss as a unique form of infertility and that sometimes getting pregnant isn't the hard part.

There are so many clinics and you know providers that this is the norm that somebody calls and says Hey I'm pregnant. And they're like OK we'll see you at 12 weeks you know and for someone who's had first trimester losses that's an agony it's a long time and so just seeing the patients for a couple of ultrasounds before they get out of the first trimester and having them know that if they do have another loss we're going to really care for them and to supportive care is really important as part of her center.

One of the unique things Dr. Shahine does is check for diminished ovarian reserve regardless of the person's age. Now we talked in our last episode about the concept of diminished ovarian reserve which is a fancy way of saying the ovaries and a woman are running low on the number of eggs left. This is diagnosed by checking blood levels like FSH, AMH, estradiol and doing a vaginal ultrasound to check in the beginning of a woman's menstrual cycle the number of antral follicles are pre follicles that are all around and they have the possibility to develop. So Dr. Shahine was noticing a pattern with patients with recurrent pregnancy loss. She thought that even her patients who were young that maybe there was a correlation between those with diminished of

reserve and those experienced recurrent pregnancy loss as women with some minister very reserved don't have as many good quality eggs remaining.

I have a very standard evaluation that I do for patients that have recurrent pregnancy loss. And I've always checked ovarian reserve tests and that's not a part of a standard recurrent pregnancy loss evaluation. If you look at the expert guidelines from ASRM which is the American Society of Reproductive Medicine or ACOG which is sort of governing we group. But I'm seeing patients that are struggling to start their family and I know that the ovarian reserve can you know dictate people's choices.

You know if they find out they have low ovarian reserve they might do more aggressive treatment sooner. It just seemed like a really important part of the evaluation to me even though it wasn't in guidelines. And so I've been doing that now you know since 2000 and 11 and I really started seeing a trend that a lot of recurrent pregnancy loss patients have diminished ovarian reserve meaning a high FSH and a low AMH. And when you start to see a trend you know and I started asking my colleagues like hey do you check ovarian reserve or are you seeing this trend. And it was pretty common. And then

a really great study came out in 2013 by Katz-Jaffe and Dr. Schoolcraft out of CCRM. And they were looking at the percentage of embryos or unbalanced chromosome number of embryos. In patients that were doing IVF and they compared patients with diminished ovarian reserve and normal a very reserve nothing to do with miscarriage but they saw that patients with similar ages who had diminished ovarian reserve they had a higher percentage of aneuploidy or abnormal embryos than you would expect.

And I sort of thought you know a lot of my patients are choosing to do IVF with chromosomal screening as a treatment option for recurrent pregnancy loss because the most common cause of miscarriage is a chromosome imbalance. So if you can do that selection before they get pregnant they have a lower chance of miscarriage. But a lot of these patients even when they're young they have a significantly higher percentage of abnormal embryos. I wonder if I kind of look at that but specifically look at it with recurrent pregnancy loss patients I wonder if I would you know kind of see the same thing.

And my hypothesis was yes I think even my patients who were at a young age with recurrent pregnancy loss if they have diminished ovarian reserve they have a really high chance of having a lot of abnormal embryos. And so I did I did look at that and it makes biological sense to me because I have this conversation with women every day. I really think that there is a link between advanced age diminished ovarian reserve poor egg quality miscarriage and any party which means abnormal embryos. And the way I explain it to patients is we're born with the same eggs we're going to have our whole life.

The eggs are literally the oldest cell in our body. And when we're born our eggs are frozen in a genetic state and it's when we obviously eat whether we are really when we're 20 or 40 that our eggs have to finish that genetic work. That's when they have to do all of that work and you have to get rid of half of their genetic content in order to accept the genetic content from the sperm and no cell in our body works the same at age 40 as it did when we were 20. And so it doesn't mean all of the eggs are going to make mistakes but it's just more common that older eggs are going to make more mistakes. So therefore as women age it takes longer to get pregnant because there are fewer good eggs. They have a lower chance of success with all fertility treatment and they have a higher chance of miscarriage because the most common cause of miscarriage is from a chromosome imbalance and 95 percent of the time that it's the egg that made that mistake. Sperm is not off the hook. Not every sperm is perfect it's just going to ask.

Yes. Like it sounds like you're kind of throwing women out of the boat. No. So there is a difference in fertility with age.

So as men age fertility is affected as well. And there's so much more research. Thank goodness that's coming out with men. We still have so much more to learn. Everything been so focused on women but we are learning that you know as men age you know there's there are effects on the sperm and fertility but it's just not as dramatic because guys make sperm every single day doesn't mean they're all perfect but they just aren't sitting in the body for years and years and years and dangerous difference with so if you have someone with diminished ovarian reserve who's like 29 or 30 the same thing happens like you're still saying more and you're still saying like it almost

the deal is almost the most relevant thing that's happening.

Yes so. So age is irrelevant in that case.

Right. I think I think that diminished a very reserve can be a reason or a cause of unexplained recurrent pregnancy loss. So in these young patients we make sure that their uterine lining is perfect and their genetics is oak are OK and their hormone levels are OK and you kind of rule out anything that you can test for and the parents that are causing miscarriages. That is very often an a quality issue. And I think that recurrent pregnancy loss can be an early warning sign of diminished ovarian

reserve. Not always but that's why I check it because I don't want to miss that.

Now I don't know how many of you caught that but to me there was a positive ray of light that Dr. Shahine just shared and what she said so far is diminished ovarian reserve and her current pregnancy loss.

If somebody has diminished her very nerve those tests are not great at really predicting whether someone's going to have a baby. Those tests predict how someone's going to respond to fertility treatment. So especially patients who have unexplained recurrent pregnancy loss. If you assume that the reason they're having losses is because they have you know poor quality eggs or are they getting pregnant with embryos that have a chromosome imbalance. Well one of the treatment options is what one is to just keep trying and the other is to do IVF and to test the embryos for chromosome

content before they get pregnant. And that's a really interesting conversation to have with people either just try naturally. And these people are conceiving. Right. Or you know a significant investment not only financial but emotional with IVF. That is not 100 percent guarantee. And so when people are trying to think through that if they have really low AMH or high FSH. If they have diminished ovarian reserve their chances of success with IVF are really low.

And there are some times where the chances of success with their next pregnancy might not be that much improved with IVF which is a crazy concept to get because we hold IVF up on this pedestal and we think it can kind of fix everything. IVF is amazing and it's wonderful. And the success rates just keep getting better and better. But our biggest limitation is eggs and sperm. So IVF is great if we can find good eggs and we can find good sperm but we can't make the eggs and sperm better. What we need is to find a way to make the eggs better or

make the sperm better or we need a way to know before someone even starts their IVF cycle. Is there a good egg in the cycle. We don't know that yet. We kind of try and we gather and we say you know we hope. But if somebody really truly has significant diminished ovarian reserve I really talk to them about trying naturally. And really alternative family building if they're really ready to do something different because I can't really fix the eggs or change the eggs but their chances of success with donor egg for example can be as high as 80 percent.

So I just want to make sure they know all the options and kind of go through really carefully.

One of the cool things that you had said was that it was just in a hopeful way was that it sounds like people who are going through recurrent pregnancy loss can still get put like there. They still have just as good a success rate just with the next pregnancy. Yes.

You I mean I think one of the most important things that I try to leave people with is hope because when they come to me their only frame of reference is every time they get pregnant they don't have a baby. Right so their miscarriage rate is like 100 percent. But every time they conceive it's a brand new chance. And if it really is that they haven't found that right embryo to conceive with the very next time. Guess what. It's a brand new embryo it's a new egg and it's a new sperm and it truly is a new chance. And so one of the

best studies and probably we're never going to be able to replicate this study is a study that came out in 1999 by a first author is Brigham and they basically looked at about 700 patients who had recurrent pregnancy loss and just sort of saw what happened with their next cycle and they didn't. Our next pregnancies use me and they didn't do any intervention you know or testing or anything they're just like OK you've had this many losses this is your age what happens the next time you get pregnant. And in that if a patient was 40 years old and they had had five previous miscarriages and their

six pregnancy there was a 50 percent chance they would have a baby that's really high.

I know.

And that seems a little bit overly optimistic but that is the only study that we have that really looked that kind of long term things. And it really doesn't feel like that with patients. And you know it's kind of how you look at it like some people might say wow a 50 percent miscarriage rate that's really high. And then other people might say wow 50 percent chance of a baby that's really high.

So it's kind of how you look at it.

But I think it's important to say that there is there's always a chance and there are women who come to me that have had multiple miscarriages and might have significant diminished ovarian reserve other providers might have said there's no way that you're going to you know have a baby on your own but it can still happen as long as you are having periods. You're most likely obviating you have eggs and there's always a chance.

If I could do one thing with this podcast is to take away the fact that on average one in four pregnancies can end in a miscarriage though that fact is unfortunate. It's a reality I feel like we should all figure out ways to acknowledge and support each other with and be open about whether we should be taking cues from other cultures and how they deal with miscarriage or just creating our own. Thankfully even popular culture is starting to spread the word a little bit.

The conversation is starting to change people are being a little bit more open about it. Beyonce shared it with her last album that she had a miscarriage between her two pregnancies. You know Mark Zuckerberg from Facebook that 2013 July 2000 I remember that Facebook post very clearly because I had just you know it's been two years into my recurrent pregnancy loss program and he and Pam wrote that me.

I'm acting like I know them I don't know them. You know Pam and Mark. But they wrote that really wonderful statement.

I put that in my book to just sort of saying you know hey we're so happy to make this birth announcement but we just really want to let you know that we had three miscarriages before we got to this point. And we believe you know sharing is important and we hope that this might help other people. And I think the more people share then fewer people are going to feel so much shame and stigma.

And I think we can learn a lot more people are more open and help each other.

We're back with our first interview we discussed the concept of rituals and how Japan has this wonderful tradition of helping those grieve and deal with miscarriage.

And in the United States there's such a stigma around miscarriage a little bit of shame a little bit of guilt especially women are really good at blaming themselves. I'm sure it's because I was stressed or I had a glass of wine before I knew I was pregnant. And people have losses most often in the first trimester before they're showing or before they've told people. And so they haven't told people that they're they're pregnant and then they're grieving on their own and they don't really have an outlet. And I think that this support of someone is one of the most important

things as a provider that I can do and provide in our recurrent pregnancy center because a lot of times we don't find an answer why someone's you know having miscarriages and know a lot of times we're kind of giving bad news. But what we can always do is support people through. I think it's just really important to acknowledge what a loss this is. And that it's OK to go through all the stages of grief including anger. Frustration sadness and just give them permission to sort of say hey this is OK this is normal. Talk about it.

What do you feel like through all of this. I mean this feel changes like every day I feel like it's totally different. What do you feel like. It's like a one or two things that is pushing you in a direction to make this kind of better for everybody and like make this more successful or just even a more a better process.

The ability to test embryos for chromosomal issues and learn so much more about what percentage of embryos are abnormal and all that we've done through IVF and that technology has drastically changed the care for patients with the current pregnancy loss because we've known forever that the most common cause of first trimester miscarriage is a chromosome imbalance. And now we're learning from women who are you know going through IVF and testing embryos that this really is the trend. And so that dramatically changes how you counsel patients because up

until that point miscarriages have been all the woman's fault. Write it's it's her body.

She's broken her baby is not body friendly you know. And you know the partners you know blaming the women the women blaming themselves the family blaming the woman. And now we really realize that it's the embryo and that is the whole premise of this book. I'm so tired of women coming to me feeling broken. It's my fault. I'm doing something wrong. My body is broken whereas I know that if we just find the right embryo or if they just try again they always have hope for it.

I mean that's huge.

And that's why I want to change the conversation for women because you know the science is showing that the majority of the time it's not their fault. They hopeful and let's do this together.

One of the things that struck me about Dr. Shahine’s book was the cover on the cover of not broken is a piece of pottery with Golden Lines highlighting where cracks had been joined together. This is the Japanese art of kintsugi, literally meaning golden joinery and it's a method of fixing broken pottery with lacquer resin dusted or mixed with powdered gold. It brings out the idea of embracing or or our brokenness. The legend goes that in the late 15th century the Japanese Shogun Ashikaga Yoshimasa sent a damaged Chinese tea bowl back to China for repairs when it was returned. It was repaired with these ugly metal staples. And that prompted him to get

Japanese craftsmen to find a repair method that was more aesthetically pleasing. It became treasured and popular enough that artists were even accused of deliberately smashing valuable pottery so they could be repaired with the gold seams of kintsugi. Suddenly the pristine became less beautiful than the broken. The philosophy and concept is embracing the flawed or the imperfect. That repair requires transformation and those cracks that mark our difficulties should not be in shadows but should in fact be illuminated for they are what make us what we are. Think of it as olden day mindfulness, a reminder to live in the now where you are and what you are not attempt Going back to what you were before. This concept is also what Dr. Shahine and why she chose it for her book.

I went to Japan about a year ago and it was always going to a back. I love the culture and it was something that I was exposed to when I was there. And actually on the plane ride home from ASRM with Stephanie Gianerelli I think I just got to do a book I got to do but I got to get this out there just like you know I gotta get it out. And that is when I came up with the title it's just like I'm so tired of my patients telling me that they're broken and they're not broken. Thinking about just everything here we can all get together.

Not Broken - An approachable guide to miscarriage and recurrent pregnancy loss by Dr Lora Shahine is available wherever books are sold and we have a link to it on our Web site at waitingforbabies.com. Thanks to Dr. Lora Shahine for taking time away from seeing patients to let me interview her. We have some things on our Web sites on the concept of kintsugi and the philosophies that come with it including the Chinese philosophy of wuwei and the Japanese philosophy of wabi-sabi. Waiting for babies is produced by me Steven Mavros. We’ll be back next time with another personal interview and a story of infertility.

If you're interested in telling your story live on stage waiting for babies we'll be doing a launch party in Philadelphia on August 9th. I'll be emceeing an event where we'll have five different people get up and tell their story of infertility stories should be around five minutes or so and if you're interested just click contact on our site at Waitingforbabies.com. Thanks and see you next time.

This audio features the song "Closing Ceremony" and "Buffering" by Quiet Music for Tiny Robots and "Divider" by Chris Zabriskie, all available under a Creative Commons Attribution license.

Jessica and her husband left the city for a nice house in the suburbs ready for a big family. Getting pregnant initially was easy, but what followed was anything but.  An ectopic pregnancy, surgery, secretly taken blood work and a diary of angry thoughts all came next and put her on a fertility roller coaster she didn't think would end.  

Transcript

(transcripts are for purposes of searching and are approximations at best)

I'm Steven Mavros, this is Waiting for Babies, where we take a deeper look into the very human side of the world of infertility. Being in the fertility field provides you with a unique view into people's relationships. I feel like when my patients are struggling with infertility they're not only going down a road they didn't expect and didn't necessarily want but they're learning things about themselves and about their partners and their friends and their families, they're finding out what they're made of and how much they're willing to go through to get this. One thing that they've been desiring for a long time I feel like today's story brings a lot of that inner discovery to the fold. Today's story comes from an old patient of mine named Jessica and she's rare because she came to me very early in the process. A lot of times as an acupuncturist I'm the alternative so people will go try and get pregnant on their own and it doesn't seem to work and then they seek out help from a physician and they do some treatments for a little while and if that doesn't seem to work then when they look for their alternative they find me.

So Jessica was unique in that she actually came to me very much in the beginning a little bit because of her medical history and a little bit because she wanted to get ahead of the game.

So this story is going to be a little bit different because it starts right off with a twist right in the beginning because it starts off with a pregnancy.

We had decided that we would lived in a one bedroom apartment in the city and had thought about maybe trying to have a baby before we bought a house but decided that we wanted to be settled and that we with friends first and then have the baby. And my periods have been so irregular. Before he got on the pill years and years before that then I came off the pill and maybe was it day 40 of my cycle and truly even though we were trying to have a

baby it did not occur to me really that I could be pregnant. And I was falling asleep at 8 p.m. and I was eating three dinners. And I think maybe you should take a pregnancy test like maybe in a few days.

So I did.

And there was periods like there is actually a longer than just day 28 I'm going to take a pregnancy test.

So he got a few more weeks than that because it never occurred to me that even though we trying to have a baby of about you are very. And so I figured this was amazingly easy. This is incredible.

So that led to a pregnancy and a routine appointment that just happened to correspond with being a few days after the pregnancy test was like hey by the way I'm pregnant.

And she said well we'll do a follow up in the office.

And she said Actually you're not but maybe there's something here.

The strip is a little bit off. So sent me for bloodwork and at that point realized that the numbers were not where they should be. I thought maybe it was just a miscarriage but when they started going up and down it was clearly an ectopic pregnancy so it was referred to the fertility specialist right away had to go in the next day and they did confirm that it was an ectopic pregnancy and they did.

Do they do it. What did they do.

Yes.

I'll just to confirm that and then I was sent straight to the E.R. for treatment.

It was early enough that surgery wasn't recommended or didn't need to be an option so easily treated with methotrexate.

So did they explain like what the topic was what that means. They did.

Yes.

Had you already looked it up or so I apparently am not a very good woman I should use my lose my card because I didn't know what that was but I think that I just feel like women should know about. I don't know all of it but didn't know it but my husband was a physician so he had explained it when we got the bloodwork back and it seemed like it wasn't going well and the doctor had first used the words ectopic and he might have asked the same question you just do you know that is what I always said no. And he was the one who explained that before he got to the office I had a general idea of what to expect. OK.

Just so no one here feels like they're also going to lose their woman card. Let me explain an ectopic pregnancy. So normally after an egg and sperm come together for fertilization that embryo floats around the uterus and finds a nice cushy place to burrow in for the next nine months an ectopic pregnancy is when that embryo settles somewhere outside the uterus usually in the fallopian tube and becomes a tubal pregnancy. Now this can be very scary and medically rather dangerous because the uterus is really the only organ designed to hold onto something that will grow larger and larger over the next 40 weeks a tubal pregnancy which is the vast majority of topics can lead

to a rupturing of the tube which not only impacts future fertility but the intense internal bleeding can actually be fatal. For women who don't go through fertility treatments many come to find they're having an ectopic but the presence of intense abdominal pain as generally they're not being monitored in those beginning weeks pregnancy for those going through fertility treatments. There are physicians that are monitoring their pregnancy levels will see something fluctuate in the wrong way and that might give them an inkling that an ectopic is happening. Additionally an early ultrasound where they look to see a small gestational sac will tell them whether or not the pregnancy is happening where it's supposed to be in the uterus or if it's somewhere else.

Once they realize someone is having an ectopic pregnancy if it's early enough and the tube hasn't ruptured they can end the pregnancy with a medication called methotrexate a drug originally used as a form of chemotherapy. This is administered via injection usually at a hospital in a series of doses until the pregnancy levels start decreasing continuously. Now if this doesn't work or the tube is ruptured the next step the surgery to remove the tube and the growing embryo getting back to Jessica.

Hers was early enough that they could use methotrexate. Not like many people. She had a big fear of needles especially the ones that were a little bit bigger than acupuncture. So the nurses were kind enough to wait for her husband to show up before administering the methotrexate.

So you do the math or she felt fine felt or felt pretty awful the hormonal rollercoaster we have ever balled so much in my life in few days after that. I found that the checks eight to not be a very fun medication and the dose that it was given and it really messed with my stomach. And so I ended up curled up in a ball for a few days. Again that was the only side effect. I suppose it could have been much worse.

But first of all I wasn't throwing up I wasn't that's great. I just was in pain but also physically and emotionally. There is a lot of stuff happening in Iraq.

So I went to I went to. A party in my neighborhood who had just moved to a new house. Maybe 20 days before to get a pregnancy test and so met some neighbors and moved in then had this happen. My husband was very encouraging and said it probably good for you to get out of the house and you should go and meet these neighbors and have a nice ladies night out. And I laughed and I was walking home and I slipped on ice and I fell and ended up calling my husband to have him come pick me up a block away because they just couldn't get there and I could not stop crying for an hour.

And he truly was like What did you do at the party.

This is our new neighborhood way that I started to cry. He didn't know what to expect. He was like people are going to be freaks me when I'm with you.

I was like I'll bet you that you just absolutely no control over being able to stop crying. And so that eventually passed.

And I remember getting the call maybe six or eight weeks after I had been in the E.R. because I had to go back every Friday to measure HCG to make sure it was going down appropriately. So I finally got the Friday call that you're down to zero you're officially done healed cured. You move on to the next step which will be not for three months because it's not the check that you can do anything. Have a Baby Give your body some time to heal.

But after the Methotrexate had ended the ectopic pregnancy she got a call back from the fertility clinic and got some news that now questioned her ability to get pregnant again.

They had done some blood work in the way it was explained to me. It isn't entirely reassuring. We were checking your blood for something and I it ran other tests on it.

First of all something along those lines.

I don't know.

Anyway so surprise we found all of these other indicators for hormone levels that are red flags at this point your levels are low enough or high enough that they're yellow flags so that could be some cause for concern moving forward. And it was higher for SH and I don't think Amy to the into that it has at that point was just the high seats. Oh how old were you with this.

So Tony 11:31 he had said it's a good sign you got pregnant this quickly as the tears rolling down my face that I'm crazy. Don't cry. It's too good not to be OK.

You're young. Doesn't necessarily matter. I care. At that point I had had other sh tests done. And some of them might have been lower. But what I was told was once you have a high FSH in that is the one that defines you essentially. So even if you have other low ones. It's still bad news for you. So that was there but again it wasn't red flag high it was a. So I tried for the summer to get pregnant in maybe three or four months and that didn't work but because of the higher each I've been told that we would be fast tracked on the fertility treatment side given the low probability of low ovarian reserve.

Let me take a quick pause just to talk about FSH and what a high level means. So FSH is follicle stimulating hormone. It's a hormone produced by the pituitary gland that has a few functions but in a woman helps with follicular development also known as helping the eggs grow. Now if you check this level in the beginning of a woman's cycle and she is of childbearing age there should be the equivalent of a drop of the FSH to present just enough to coax the eggs within the ovary to grow and start maturing so eventually ovulation can happen. There should be enough eggs around there just a little bit of FSH age can get one of them to grow and to obviously. So following this theory if you check the age

and suddenly it's high the inference is that there aren't that many eggs left and it's taking more and more hormone for an egg to start the process toward population. Now fertility doctors have a fancy term for when the procedure is high it is called diminished ovarian reserve. Now it's fine to have a high off age if you're in your mid to late 40s and you're done conceiving and are on the road to mount a pause but it's not so fine when you're in your mid-30s and still trying to conceive. Now I'd like you to keep in mind that having a higher age does not mean you can't conceive and thus needs to be taken in context with someone's age or other hormone levels like their age, AMH their LH and their estrogen levels at the

time they take the test. Needless to say for Jessica it was a little scary. So she was very willing to move forward with the treatments that her doctor recommended. So they started with some basic interventions using an oral medication called clomiphene or clomid and doing a few IUIs which we discussed in the last episode.

So in the fall we switched to clomid for two months which I love I felt so great on that which most people read.

What was so amazing in there is Chinese medicine and for tell you book that I have it I'll find it and show it to you. And it talks about the difference. I have no idea what the word is but just different. Body types and how there's a certain type that responds really well to clomid and do your test to find out which one you are. And sure enough I am the one the doctors up with responding to me but I felt like I had so much energy I felt my hands. I really liked it. So I was like this will solve all my problems because clearly there's deficient in something. This is solving something for brains better. So I'm feeling so much better. So clearly we going to get pregnant and

then that didn't happen. And so as I'm sure you know from hearing other stories with each month and with each step higher on the ladder the devastation really not to devastation but the scientists. Each month when it doesn't work out it gets a little bit more and continues to increase.

Now everyone has different ways they cope with the struggle of infertility for Jesica. She had found three unique methods to help her cope. The first was knowledge.

Yes. Did it. Probably way too much reading which is never a good idea. Right. And the books are what material we're using all of the above.

So we go to the bookstore and try to figure out which book I wanted to read by reading them all in the books and then coming home and crying because I was convinced that I would never ever have a baby and that whatever I had was a thousand times worse than what the doctor had explained as being.

And that probably wrecked my emotional state even more than other things.

The second thing she used to cope with something she'd done for much of her life which was writing in a journal.

So I used my journals not as a diary. Here's what she did today. I wrote walking down the street with her and it was very much a.

These are all of the things that I'm sad about or angry about are these are the people that piss me off today or I want to punch the pregnant woman I saw when I was walking down the street because I can see something that's awful I hate her.

I could see that to most people so writing in the book. Nobody ever see it. Comes in handy. And it's something that I've done since I was in third grade. I mean I've always had a turn on. I was there for that purpose. This is when you I mean this is who I'm angry I it sound like a really mean person in.

And then I write and I'm like oh I feel better. That was such a stupid thing to be mad at them for. Of course we're still friends. But wait for it. I never liked that part because then I feel better. So if anyone ever read my diary to see the part where I say I hate everyone which is awful because that's not true.

And finally her third and favorite coping strategy was adding a little something to make her laugh.

We adopted a puppy along the way because that seems like a thing to do. And so. Probably stereotypically the puppy was maybe this was maybe after the second month of clomid.

So it was feeling great. Take the pressure off.

You know it didn't take the pressure off but I realized when we got the puppy he was such a fabulous addition to our household. And it was so huge and so much fun when he was playing with the ball and he the first night we got him he fell asleep standing sitting up.

I think he was so stressed about this house and he didn't want to fall asleep so we just watched him and he just stood and hit the floor things like that. I was laughing so hard and I realized oh I haven't laughed in a while.

This is oh. And truly it was not much of a shock to me to say this is what it feels like to laugh I forgot that I have a laugh so he was really really good in that perspective just to lighten things up and to have just so she had her books her journaling and her puppy.

But her initial treatments of clomid and why weren't working after the initial ectopic. Her ultrasounds had shown something didn't look great in her tubes and she had a test that showed there might be fluid building up in one of her tubes. This is referred to as a hydrosalpinx. Now the next step in her treatment was to move on to IVF. And in theory the beauty of IVF essentially takes the fallopian tubes out of the equation because you're kind of going around them you're taking the egg right out of the ovary fertilizing it in a dish and putting it back directly into the uterus kind of skirting the fallopian tube. However recent evidence suggests that the fluid built up in the tubes from a hydrosalpinx could be adversely affecting the environment of the uterus and making it less welcoming to a pregnancy. So before embarking down the road of IVF she and her doctor decided to have surgery to get the tube and its offending fluid removed.

This turned out to be a little bit tougher than she thought it would be and because it's just all things decided to have surgery to have my right to be removed. So did that right before Christmas late. So I again thought that it was pretty intense. I thought it was a pretty major surgery. I've since talked to other women who have done it I missed seven days of work. I have friends come over to stay with me while my husband was at work to make sure I was OK.

I waddled around do a shower for three days and then I talked to other friends like ya it was really hurt that night and then at work the next day I was a little sore. You might do the same surgery that can be possible.

So that was my experience with that surgery. But I know other women who did it who had the same surgery and didn't feel that way. I think that I am just a very sensitive person and it takes me longer to recover from a lot of things and things affect me more strongly than other people. And at this point in my life I recognize that that's just me. I'm OK with that. I'm prepared for that. So for me it was hard but I thought that it would be harder even though it was as hard as it was so they went forward with IVF.

I think most people don't realize about IVF. It's just how involved it is and how much it can take over your entire world just keyed into this one thing that kept driving her crazy in terms of the phone.

And I think that people who. Haven't gone through IVF. I think that it's just the medical appointments and it's not it's the phone calls and it's the. Insurance industry ordering of the meds and it's the reordering of the meds. And then the meds get shipped to the wrong address and then or they don't leave them but they are on ice and so they can only last for a certain amount of time and they need to track them down and it can take up a full day easily even though it's not in the doctor's office so the amount of time you can get is something that was really unexpected. And it's. Something that I don't think. My husband

realized not because he didn't care but because he. Just wasn't there. And if someone had told me Oh it takes out a lot of time I guess you're supposed to do you make some phone calls I get it. But until you realize how long you're on hold for and how many phone calls they are recalling in insurance company about something to find out if a medication is covered in someone and he said he need to talk to this other department here's their number I'll transfer you the whole way the whole way to on hold. Finally got through to somebody and said it's a great question. The. Department you want to speak to is this and she gave me the number it was the first number hit called no.

So it's just those kinds of things that. I add to an already stressful situation. And make it really difficult.

Was there ever a time your husband took a phone call made a phone call like was he. How was he as part of the process. His work schedule is really really close. And I understand that. And so that was out of his hands. But it meant that he couldn't go to a lot of appointments with me but they were Saturday appointments where I still went by myself because it was his. He could sleep late. He had a very stressful work week and I didn't think that dragged him out of bed for something that I could do on my own. In theory was the best use of his time. It would be better for his health and more being if he could get more sleep. And there were a few appointments that he

came to with me and he was so anxious that it made me more anxious.

Aventures I don't tell you this is OK on the nights on Saturdays where you were like not just sleep was he like OK.

Oh yeah. Oh yea.

They were also telling me I was every Saturday and there were times where he would come out to practice after and it would be lovely. But there were mornings where I don't think either of us could justify why both of us should be miserable and get up at 7 a.m. on a Saturday.

So they go through IVF dealing with all the many injections appointments many many phone calls. And initially it looks like things are going well.

So when we did our first round of IVF they weren't even sure if we would end up with any eggs. And I was on a very very high dose of Follistim trying to remember that. But doctors were thrilled with how successful it was so we got a very nice collection of eggs and we had a very nice collection of embryos and were able to choose from a few of them for which ones we wanted to put back for a D3 transfer. And I just thought these are all great signs in clearly clearly clearly this and that is that the time and come we've done all these treatments and this is in India for us

and my pregnancy test was on a Friday and I went to work because it's very close to where I got my Vijaya anyway.

So I was already there why not.

And my husband went to work and I had I was so convinced I was going to be positive I had actually planned how he's going to share the positive news with him. I got the phone call and had little baby socks that he put in a car and walked down to his office for the summer for her pregnant. And again I have amazing friends who are so supportive and they spent most of the afternoon on g chat with me because there was no way I could do any work. It was just as soon as you know Noon has come those blood results are back in the office they are being reviewed somebody probably already knows what the result is. It is impossible to think about anything else

especially for the first round when you don't know what time they call and how it works and instead Jim back to that had you not tested at home. No so because I was afraid of a false positive I was afraid of the wrong result and I figured I don't have the emotional strength to get my hopes up and then find out that that wasn't accurate and also because I had done a home pregnancy test before that didn't lead to it.

So I was kind of done with that thought Yeah yeah it really are.

And even it was positive it didn't mean that it was going to be successful so I figured why bother. So no I never did for any of my rounds of IVF never peed on a stick at home and even had my doctor ask when I showed up.

So did you and did you. I don't do that.

I don't I don't really cheat on other things.

Nothing nothing at all in life.

So after getting ready with her baby socks in hand she finally got the call.

It was not positive. And I have never crumbled so quickly in my life and so sitting in my office at work and just. I don't know what the nurse on the other line said but I think was like Are you sure if this is their mistake. Interesting. I don't know how to tell you. It's not positive. You aren't pregnant. Like what. What's the next step and say you can call the office on Monday and schedule an appointment for a follow up and that's all I remember from that conversation and hung up the phone and called my husband sobbing and I think he was also expecting it to be positive and so managed to text to some friends who

live who lived who worked in offices close by. And again amazing friends make all the difference which is part of the reason why it's great to tell people if you don't tell people they can't support you. But they were in it with me and she was like I'm leaving my office now I'll be there in 10 minutes. Tell me tell me where to go. And I had emailed my boss who knew what was going on. Super super support support. But I told her I think I'm going to have to head home early now. And she came down the hall and knocked on the door and I was in tears and she's like OK I know what this means. You don't have to say anything. Clearly this isn't because you have a happy announcement right now. You are here at this

hour and I don't think I've ever come so close to hyperventilating or truly just not being able to function. Absolutely hysterical. It was the worst news I'd ever gotten which looking back on it now is makes me a very lucky person that I haven't had something at that level or more that was so devastating. But my coworkers drove me home out to the suburbs and dropped me off and as I was in the house awhile before my husband came home and he was to get a lot of meteors out. But it was a

Friday afternoon and it was cold and it was Hasn't home.

He came home and he was sad. He was handling it better than I was. And then the next day was Saturday and I didn't not get off the couch and I don't remember which show I watched all of for the day if it was down to an RV or lost or something. I'm watched every single episode and then from another show I watch everything. What is it about. And by Monday I went back to work. So I was functioning. And I think it didn't take that long and if I hadn't burned my journals I mean Bill to tell you if this is accurate or not but it was already on to thinking about the next round.

Getting a negative result on the first round of IVF I feel is particularly devastating because it's the first time you go through this superintends process and you just assume that with all that effort all this technology and all this help that things will work out in the barn you get that negative it really throws you a. It also makes you question everything from previous decisions you've made. The medications that you took even the doctor that you've been working.

But we ended up getting a second and third opinion a fourth opinion which I felt very guilty about because I thought so highly of my reproductive under monologist and. I thought the world of him and he had been really great. So finally felt OK with doing that that with a few other doctors and ended up after all of that staying with my doc.

Do you feel like you got good information like it. It made you feel going back to the first was a good option.

Some of the concepts are better than others.

Some of them I was really not impressed with which had the impact of making me feel really great about my doctor I already felt great about so that part was fine. And then some of the other ones we said if we're not going back to the same place this would be our second choice we really like the doctor. We had good conversations with him and even brought some things back to talk to my doctors and say what do you think about this is what somebody else recommended and did your doctor know that you were getting a second. Yes.

Because I don't see at all now that this is what we're doing.

Please don't take it personally. Did you take it personally. No not always like you should do that.

So they pushed forward and went ahead with their second round.

So the second one was also very similar to the first I think we have similar number of. A similar number of embryos did a D-3 transfer again and for that time my husband took vacation from work.

So we were together the day that I got the phone call. So we we were there in an interview and we were Panic's together and the phone rang and we got to the doctor's office.

So it's like I was in surgery.

And then at this point I know the nurse in the office so well and so she called to say good morning.

So I was like What do you mean you can use is a good news you're pregnant. Congratulations that works.

So. This is amazing. The blood test all looked great. So I remember getting there. It was actually at the high end her one of them and we had put two embryos back so there was some question there. Hi HEG. Maybe both of them implanted. We don't know and went for the ultrasound and I went by myself because my husband had to work and they had said that your numbers look great. We'll see you for the routine ultrasound. Everything looks good. Nothing changes you feel any differently. It isn't that I had any cause for concern and so I went for the ultrasound.

So like your numbers are just the congratulations they did for you.

So I started doing the ultrasound and then I went to the doctor came in he said see what we might see today and that will probably be either one or two even. Is it possible that your heart beat at that point in six weeks. Namely that whatever it was.

So do the ultrasound and there's just silence on his and just absolute silence that goes on and on and finally said You have to say something or say please say something. And he said I'm not seeing what I hoped to be seeing.

And still at that point they kind of obviously started to cry and.

I can't remember. What he said next. He said I see something but it's not what I want to be saying. So I think it may be ectopic and I'm going to send you to the E.R. to get a better ultrasound.

So like I've been through this before I came back to the E.R. the simiar for any type of pregnancy the same thing.

And I had forgot my phone at home that day. What are the chances I'm going to have a cell phone. He's my husband so he's able to use the phone in the doctor's office and he poor guy was expecting twins or who knows what it would be. And instead he gets me bawling at 10 a.m. on a Friday morning and saying it's done it's for not having a baby it's not going to work. And so he was able to have a colleague cover all of his patients that day and just cover for him and he just left working him to the E.R.. To be with me which was awesome. So that was very very helpful.

And that wasn't as devastating as the first round it didn't work out because we had had two weeks of being really excited and very well. Talk a little bit about I don't know if we talked about names but just to refer to the baby or the baby and I go I'm hungry.

We're all hungry now.

So we have those two weeks of really being able to play with that and have that and truly happy because we didn't know anything else at that point. And also just the knowledge that it worked to that even when I got news percentages that weren't 90 percent of what we say that they were going to be the 90 percent possibility for me that. It still works. And if it could work this time maybe it could work again. And so I still had a lot of hope even though it didn't work. So I only had one fallopian tube after that point because the other one had been surgically removed already from the hydro cell pings before we did

IVF. So choose to treat with Mother Trixy again because I definitely definitely was not going to give up my only fallopian tube. I wasn't ready at that point.

The only problem was this time. We were much further along. So my HEG numbers were much much higher. So it's going to take longer to come down and I was below the cutoff because there is a cut off at which point you can't do it anymore. So I was getting close to that but wasn't there. So we still do.

So did the Methotrexate went to a bar after Actually it looks like they can drink now and randomiser. So my husband's friends met us out in the last. Time he wasn't the first think it was probably for the follow up a say a few days later I saw my hospital band on and we went to the bar and his friends met us from NPR. And so I had a glass of wine and then had a second glass of wine and I went to the. Bathroom and I'm here know I was in the bathroom and my husband's friends. Should you be drinking that much. That's.

Kind of. You say Oh sorry I forgot to tell you when and why it didn't work out. All of those things.

I I'm just. Like I'm so sorry. But she was on her way to be a horrible mother.

So that's true.

I get her to do the time they had the first dose the next one is every year how many the leader went back for that. And then it was this had to do the weekly monitoring and get the same reaction the like did you react the same way. Yes. It's miserable.

And then. Everything was coming down. And got the call on Friday that had actually gone back up.

Which is horrible that's not what you want because it means it's still growing somehow. So talk to me Doctor. Five o'clock on a Thursday afternoon. And at that point it was do we do more rapid Trixy. You were kind of reaching the lender for how much methotrexate we want to give somebody or you could do surgery and that was a really I knew since I now say we need to schedule the O.R. for tomorrow morning and my scheduler is leaving you need to decide what you want to do. So we decided we're going to give it one more try. From the Trixi and went back to the E.R. The next day and got me through around the Tranxene for that

topic pregnancy and then we let her make the next day to go to Canada.

And I was the worst vacation of my life. I don't recommend that people get the care that.

She got. I don't get mother to say it's not because you were called to be.

Yes.

And then we had to wait another three months because of the taxi. So that pushed us back.

So you know I was tweeting about movies all day and then it resolves on its own.

How many weeks or a month later. Back to zero. We did three months and then were able to start again after the first topping.

Did someone tell you that topics were the more likely were that a higher likelihood.

That's a great question. So I very specifically asked my doctor is like how is this possible doing looking at anatomy like so one is this way. What is it. What are the chances. One was a I hate the word natural consumption but one was that way and then the other one was for IVF and he's a you have the worst luck in the world. That is really what it comes down to you get to play the lottery because of the odds of this happening. You know anything can happen which also helps. I was in a very weird frame of mind at that point of odds and percentages and is it going to work is it not going to work even if it's low. It could still work out

like you could have one in a million odds and things can happen this is great news for me because I'm really good about my jobs moving forward because you know this will never happen.

It can still a so they done two rounds of IVF and just to had some encouragement to move forward knowing that at least her body knew how to get pregnant at her high office age wasn't holding her back. And seemingly had plenty of eggs that she could work with. Everyone processes these losses and events differently at this point Jessica was in it all the way. She was on what I call the IVF rollercoaster and was ready to hold on for dear life till it finally gave her the result she was looking for and thus was very willing to move forward. Her husband seemed to be a little more on the fence as to what the next step should be.

Did you at any point pause and say do we really want to keep doing this like was there ever a moment where we were like maybe we need to not keep going.

So maybe there is a moment like that and I say maybe because I'm guessing that my husband felt that way and I don't think I ever picked up on that. So we might have had conversations where he thought he was saying that and I didn't hear that at all. And we talked a little bit about adoption and how he wanted to spend our money and we're going to have to pay for the next cycle and we skipped that and I had reached out to friends who had adopted and got a lot of information and was doing a lot of research in terms of looking at specific websites and what

the application forms were and ready to go down that route. That's what we chose to do and he did not want to do that. So a lot of that research on my own says he didn't want to do that. I assume that that meant that the next step would be another round of IVF. So we talked about it. And I think I continue to have appointments with my doctor to check it out. I mean he took few months off and then had another appointment and so got the OK from him to move forward with IVF.

And based on somewhat I say that was I think for a start it was going to be a pretty quick decision for me to order the meds and start. And so I think I might be remembering this incorrectly but I am pretty sure I had a doctor's appointment.

I came home and said to my husband like I'm going to the masseuse for good to go we got the all clear and his response was is overwhelming as I had thought it would be I think I was more excited at that point which should have been a red flag but I attributed it to his nervous. This is probably our last chance. This is stressful. If it doesn't work I want to give him a space that won't press that. So we didn't talk a lot about it.

And so I started the third round and it was it was going well and I think using acupuncture for that one actually it was going really well.

And he came home one night and we've done couples counseling at that point I don't remember but came home one night and he said we need to talk. I don't think I want to have a baby. So what are you talking about. Can't you see you don't have a baby. This is our dream. We want to have a baby. And he said it about the way we all say don't think that we should be married anymore. I think we should get divorced so we're going to get divorced and he's like we aren't going to do an embryo transfer like I am not going to participate in this meeting for him.

And so at that point I was like OK we're straße we need to do couples counseling we'll get through all of this.

So I was thinking we would still fertilize the eggs because frozen embryos have a better slightly better rate of success than just the frozen eggs. You were the doctor you know. So it was maybe five days away from reaching that point three days early for retrieval.

Was it before or after you had injected yourself for the ninth day. Oh it was before. Yeah. And at that point I was doing my own nightly injections because was so he had been doing most of that except then was sleeping through the morning once in a while slightly passes as if I'm not going to wake you up I'll do it myself and if I give it to you I'll have to give yourself an injection after you guys were having this conversation probably me myself because I wasn't really in the middle for a few days away from you.

But I might have been able to do those myself because those are just some new ones.

So I think that the person is probably the most shops of anyone that I told would be my reproductive technologist the next day when he is just out and counting the follicles and the like so we need to talk about alternatives to D-3 transfer said D5 transfers. No no not that kind of Mulhearn it out maybe freezing rates. And he was like OK we can talk about that but why is it. Well my husband does have a baby. Oh my God. He doesn't want to be married either. So stop talking let me finish the ultrasound and then we will and then we'll discuss.

So again they were amazingly supportive and his office scrambled to get me the details of. How that would change the price of what the procedure would be and. How things would be different.

I was the one who asked what about a freezing that would be a great day you should do that. So that's what we do.

You guys were I mean like the basic question is did you see it coming.

So that's a very fair question. That's a great question. In hindsight yes definitely at the time I don't know if I was just blind to what was there and they didn't want to see it or if I was so focused on dealing with having a baby and all the issues that came from that that I truly didn't see.

So I don't or I don't know that was a reason why he was acting where the communication was because of this like large factor that's in the early. And of course looking back on it there were other factors.

This isn't what broke up our marriage. I think that we are much much better at not being married and we're probably I don't know what he's doing now but I hope that he is much happier as well I hope that he's as happy as I am and not being married to him was good for our future. And I think I can guess he probably feels the same way but it wasn't just this that broke it up I think it help speed it up and people say Oh see everything happens for a reason. It's a good thing you have a baby. And I used to be one of those people that said everything happens for a reason.

I talked earlier about wanting to punch people in the face in person but now when people say my I'm going to have to hold back because I really want to do this and I'm not just going to say things don't happen for a reason that's not how you justify a horrible pain in people's lives.

I think we're very resilient human beings are human beings are very resilient. And so when bad things happen we look for a way to rebound. And in doing so we see silver linings and then people can take that to mean you know see this is what was meant to be all along look at how happy you are but it's not that bad because it is an outcome of it which are two very different things.

So I'm glad I was able to learn that lesson with the doctor the first person you told about you guys getting is I think are the second. Did you hold that back from friends for a little while just to make sure it was for you. Yes. It was a pretty quick process. That was the end of February middle to end of February that he first said the words I think we should get divorced and then we had a few couples counseling appointments. They were making progress and he was a

we are making progress. Nothing that is going to be said here is going to change my minds. If you want to go because it helps you process it I will keep going. Know if you want to keep spending the money for that purpose then we can keep going but nothing's changing. All right. Well that seems like a waste of time.

So I already have my own therapist. We go together.

And by the by late March we had filed for divorce.

So who filed paperwork. I did actually. Did you win. Yes. Because I wasn't the one who initially requested it. If. It wasn't so much the filing. It was weird it was to see my name as the plaintiff that was here. So I'm not. Seeing him as a defendant like I was going after him which was untrue. But in that way I also was very clear my head. I don't want to be married to someone who doesn't want to be married to me. So. Anything that we had been so sad for so

long.

That it. Just seem like okay this can't be any worse.

So Jessica went through a retrieval and was able to freeze her eggs and still has them now if she ever needed them. After that as you'd expect her life began to change in the way anyone's would going through a divorce. And as anyone who has been through it already. I love that beginning time after getting divorced can be intense and tumultuous and make people do things they never thought they would. Jessica sold her house in the suburbs and was preparing to move back to the city. She never thought she'd move back to. In between she had an idea for escape and piled up her vacation time and spent the month in Spain and reconnected with a part of herself.

She hadn't seen in a long time so I love being married and I came back from the scene of questions like 12 hours a nice transition is a good way to start my new life and to have that month away and to meet people and I did our Spanish classes set up with the school and met a lot of amazing people through there and surprisingly but probably not surprisingly there were a lot of women there really.

So I just got divorced. I just recovered her long term boyfriend stories while we go to the discotheque.

So it's time to just for the first time in 10 years. I'm going to order a train. This will be great and I'm not going to care about anything. What was it like to be single.

It's going to in. Yeah yeah it was kind of exciting.

How exciting is it would be for other people watching the movie like a long way to go to get back to the normal social scale.

But but for me it was very exciting and very fun had a good time.

So it's been what six years five years and it's basically the start in terms of the almost six years. Yes. Where are you with your husband now. Thirty six years. Yes. You have eggs in the back. Correct. So to speak I. Is the thought get married again have kids again have you. Is that something you're avoiding thinking about are you on it.

What's your so I'm not necessarily opposed to getting married again.

I wouldn't rush into it. Certainly.

And it's not something I'm looking for. I'm open to it but not seeking it out. And I'm very very happy with how things are right now and I really like my life and something like I'm a sucker.

You think your marriage has a boring life but very very happy with how things are.

And then in terms of having a baby I think it was for survival purposes I had to find reasons to. Justify that not having a baby was OK. So I spent a lot of time looking for all of the reasons that life without a baby is good.

And I did that.

As a temporary fix except I convince myself so well that I truly believe all these reasons now about why it's better to not have a baby than to have one. And so now I get baby announcements like oh that's too bad for you. I'm sorry you're really missing out.

I'm going to go to sleep for ten hours and nobody is going interrupt me and my friends who have babies I'm sure would.

Probably say that since I am alone and you don't have a baby and you don't get to witness all these things but to each their own. And there are different ways to be happy in life. And for right now this is what's working for me and I used to be very much a planner. Probably goes along with the not cheating. And. I had everything planned out I got married and we bought a house and then we were going to have a baby and we are going to live happily ever after. And even the best laid plans can still go up in smoke.

So what's the point of planning so I don't know maybe I'll have a be maybe I won't but it's not going to be tomorrow.

So beyond that I couldn't tell you. I know I'm not. I know I'm not interested in having a baby on my own. And I know I'm not interested in having a baby tomorrow. And I know I'm not looking for somebody for the purpose of having a baby with them. So aside from those things whatever happens I'm kind of OK with me. And it's really fun and exciting.

So I've been in this field for a while and this was a unique story even for me. That's one that's always stood out.

So few have ended either way you're just as a problem. Yes.

Like literally like again to other people around you for free for all that everyone else in the world besides me Will course really.

The fact that it happened which is a fertility doctor see Blake be like oh you guys are definitely getting divorced.

Oh no he didn't say that. I just think that he was very surprised at this and at what point. Did you not see this as something along those lines you think was this clear to him.

But I guess if I'm honest with myself about this so I will bring everything full circle. I said that I'm not the poster child for infertility because my first round of IVF didn't work. My second round of IVF was ectopic and my third round of IVF ended in divorce.

So I don't think anybody wants the other poster child for Tiriel our dad were out running around.

Those. Steps.

Waiting for Babies is produced by me Steven Mavros us with help during interviews by Laura Mullin. If you want to find out more about the stories and what we're up to check out our Web site at waiting for babies dot com. And if you really like what you hear and feel so inclined go to our site and click donate and consider giving us even just five or ten dollars to help us keep working on. This is a passion project for me and every little donation allows me to take a little bit of time away from the practice and spend more time telling these amazing tales. Also on our site if you have a story you want to tell and are willing to add your story to this conversation. There's a form on the website awaiting for babies dot com slash contact. This is Steven Mavros. See you next time.

We got another bonus for you at the end here. Throughout the interview you may have heard Jessica talk about how she burned her journals and we were so curious about how that happened. So of course before we let her get away we asked what it was like was it a bonfire on the beach a trash can in the living room with the fire alarm going off.

What was the pyre like when you finally decide to burn. What did you do with the ritual.

So it was spread out over a couple of instances because he made a point of reading all of them before he burned them.

And my fear because I only write mean things to me was that I was going to die insane and somebody was going to find them in my storage unit and be a horrible person and I would have no opportunity to address people with that memory of me everybody.

So I was genuinely afraid of that. So I started reading them. I had gone to my parents house and they have an outdoor firepit and keep in mind I was a mess by the time I arrived there I had just sold my house had just gotten divorced. I was physically and mentally exhausted and I read through a bunch of them and then it's like I'm going outside and you won't see anything so like ripping them up and I'm just throwing them in the firepit and it's windy and flaming are in the air and my head must have looked out the window and thought she has lost my mind whatever she has just been through has set her over the

edge. I can't even imagine what they think you should get their perspective on that. Finish them all. We bring up free speech and take them away. And then in my first apartment when I moved back into the city I did have a working fireplace so I bought all of them and then I burned them in the fireplace in slightly more of a ceremonious way and that I wasn't completely looking like it was me.

Was the reply for the privacy of my home on a Saturday morning.

It was like I was having a fire in the fireplace and it just happened to be burning people inside. So I actually felt really good burning them and I was like other people who are horrified that I destroyed those records. But it was just it was bad things. It was bad. It was everything it was so negative and I didn't want that. Aside from worrying about dying and having other people find them but just didn't want that in my apartment. That part is done and I learned lessons from that.

I've embodied those lessons and taking them with me and I don't need that in down anymore and I might regret that in 20 years but so far I've been very very excited about that decision.

This audio features the song "Lullaby for a Broken Circuit" and "Interlude 4" by Quiet Music for Tiny Robots, "Readers, Do You Read" by Chris Zabriskie, "Running Waters" by Jason Shaw, "She Lost Her Wings (Instrumental Version)" and "Tick Tock (Instrumental Version)" by Josh Woodward, all available under a Creative Commons Attribution license.

Steve and Cassie had a whirlwind romance that went from a long distance courtship to marriage to quickly trying to conceive.  It took a year of trying to find that Steve was missing a key component to making things work: sperm.  After a surgery no one had ever heard of, and a final answer on what the problem was, they had what should have been an easy path forward.  As we keep learning, few things are easy in the fertility world.  

TRANSCRIPT

(transcripts are for purposes of searching and are approximations at best)

This is Waiting for Babies. I'm Steven Mavros. So we just passed National Infertility Awareness Week in the U.S. The latest statistics show that one in eight couples in America and one in six in Canada will experience some sort of difficulties conceiving and that's not including the same sex couples or single women and men who have their own barriers to bringing a child into their lives.

One of the toughest parts of infertility both for those going through it and the caregivers working with them is figuring out why. Why is this happening why is this not working. I feel like when you ask your average person most assume that there's usually something wrong with the woman. And given that almost all of the treatment options out there are women centric, you really can't blame them. After being in the industry for 15 years. I have fully turned to the woman side of things and I give them so much credit. Think about it when a woman walks into a fertility clinic almost every time someone's going to talk to them about how old they are, jab their arm to get at least three vials of blood and someone is going to put the wand of an ultrasound into their vagina and prod around for a few minutes and that can not feel good. Now what do guys get when they walk in. When they walk into a clinic. Usually the only thing they get is porn and an empty cup. Now I'm not saying that is not an awkward situation. I'm just saying Guys you need to have an account in good standing at your local florist and chocolatier.

Interestingly science has found that it's not always the women's fault. Currently we think about a third of the problem is actually due to the guy. A third is due to the woman and the third is that dreaded phrase of unexplained. Where on paper everything looks like it should be working. But for some reason it's not.

Today's story is going to be a little bit different. First you're going to hear a new voice that's my office manager Laura Mullin who accompanied me on many of these interviews. We're going to switch gears to the Y chromosomed people and our couple.

So my name is Steve. I'm Cassie. And how old are you guys. I am 34, 32. Like many couples they figured having a child would be easy and followed what they thought was the natural progression of a relationship. That's what people do like get married you have sex you have kids. Right. So that's the natural progression.

I just was thinking about her pre cana class. They asked if we had a Catholic marriage. They asked this you know how many children would you like and write it down. Think. I said as many as we can. All right. All right. Grace is not taking into account where that cost could go. Yes. You never think about it. You know you never think about. I'm going to have to pay to have a child you know there's going to be hospital bills like whatever the kids cost money diapers whatever like I get that crib all that stuff before they're conceived even Yeah but to even think that you're going to have to spend money in order to even have a chance to have a child that's made everything right. First is the free part of it.

Cassie like many women I meet had a little background fear about getting pregnant and decided to be proactive about doing all kinds of like uterine toning teeth and leg.

So you seem like yeah I mean I I'm a doer. It's not like I'm not patient. What was that like like what was your what was your process for you. I just got a lot of Google I think you know I'm just looking Yeah I don't even know what I probably don't like. How do I get pregnant. Dear Mr. Google.

I want to go online and actually you know phrases crazy easy or you go to a lot of money on ambulation can set you free. Yeah. You just get crazy because you start thinking like maybe it's the birth control. Still right. It's not like me it's affecting somehow you know maybe it takes it's taking maybe all those years. Well then it's like

Then you start thinking like Cassie cast when doing the research she would be like well I found some stories I like it took somebody a year and a half to get pregnant to get the birth you know. So then you pleased in your mind a little bit. Right. And so I remember you telling. Always you come back to you when you stop trying. Will happen. And unlike Steve I think I was always a little bit nervous about having infertility problems just because it was so important to me like it was.

I guess I should say I never took the idea of fertility for granted so I don't think I've ever said this to you but I always did kind of line to try right away just in case something you know something was normal and like my radar was up you know probably earlier than most people were me to say you make me strong. Nothing's happened yet.

So how long did your real try until you realized that something was. For me it was six months when I started like I started feeling a little bit nervous which they tell you is too early. And I went to the doctor who was like you can find he kind of gave us a look at you know if you like you can be fine. Could you guys. You guys are fine. What do we look for. So that is a glow of taking out a saucer or something some sort of or that we had around us but we are too young to be worried about here right now. And so we gave like another six months.

At that point we went to the fertility doctor. Like ok it's funny now what happens is that like they focus on the woman that's probably my fault too. You know like I just kind of see you know like I know like even when we went to the fertility doctor it was like kind of more focused on you. It was like you could do your sperm sample like will get that. So I'm like take care of it.

Whenever it wasn't really pressing it with her it was my impression anyway it was like we need to get you and do this to us we need to do this a little one is sharing you have more things to check. So after Cassie did all of her testing the clinic turned to Steve.

But I remember it was around July the following year is when I had my first sperm analysis and it came back with zero. And I had brought the sample to the doctor's office because they said you can do either one. You can you do it there you can do it here and there. So we're meeting you for a while. There's no way you know it there's no way. Right. There's just no way. They don't get health care in my body. I you know there's just no way. Just like the doctor said you're fine. I can tell you're fertile but could you. But after that then I did another sample. I guess a couple weeks later I did another sample and I did it at the doctor's office this time. And then it came back zero again and and they said I have what's called azoospermia which best when I was diagnosed with basically is you're born with no sperm. They did say there is a possibility that I could have had sperm at some point my life made of 14 13 15 whatever. And then gradually over time lose it. But they they're pretty confident that I was probably born probably born without any. And I think what is it is that one in 10 million people. That's very small. Yeah. So yeah that was a big big hit. And that's when you know we really were like OK now what the hell do we do. Right. You go in for the first test. You find out what your thinking is going to be you probably I mean I just feel like every woman I've ever talked to like that. Yeah. So you go when you do the first one and they say zero. Now you go into the office and you're about to do the second one. What did that feel like. Yeah. And I remember being like well first of all I didn't have sex or masturbate or anything for like three days. I'm like I'm leaving no doubt. No doubt that's why I'm like this is going to be this is if they're like I'm going to give myself the best opportunity not to get too graphic with the guys but I was I was leaving no doubt. So there you go. I was I just I treated it like I was walking into like a final for college you know like I'm walking into like a presentation in front of like a thousand people i actually like it. This is like it's my job right now. I'm nervous. Nervous very nervous. You know they're optimistic. Yes I'm trying. I'm really honestly like again I'm an optimistic person. There had to be something wrong with their machines. It's not them it's not me it's them. Right. So walking in I still nervous but I still was pretty confident that OK. It can't be zero. I just know it can be zero. They probably just missed a low sperm count right. Not going to deny that. But you don't just go from three million to eight we miss all three million or whatever but I would but I was like they probably just missed some or it didn't do it thoroughly enough. That makes sense. What was the atmosphere like like was it easy to do what you had to do. Yes so that that was interesting I had never done anything quite like that for most men. Hopefully I don't have to go through something like that. It's awkward you can hear people outside like you hear people walking around. It's not like they took you away to like a sweep like up on the fifth floor or it's ok other places get like get out of bed and like you know like the way you want to watch it's late it's very very just like that. You know what that room is used for. And I hope that they wake that place down every day every hour really. That's why when they gave me the choice of doing it at home like no brainer like this is done you know. Oh I'm happy at home. Maybe the temperature was wrong here. Something must have happened something. We're getting. Some sort of contamination. There is some sort of temperature. There was a virus that got inside and killed every entrance point in it. Did you like that. How did you transfer. I had they gave me they gave me a a cup and just put it up and I had to I just put it I had to make sure that sunlight didn't hit it I don't know why I put it in like a brown paper bag carried it over and like that's kind of like you think when you're walking that everybody knows you're carrying and they're like you know like obviously like nobody knows what you're where they are. Just like in real estate. So it's kind of funny. Lucky for Steve and Cassie there was a ray of hope. What was cool about it at the time at the hospital that we were at. There was a specialist coming in and he specialized in male infertility. And like I said this is very very very very very serendipitous. And you know we were pretty hopeful. I think we were his first patients. The next day it was pretty cool. And I remember meeting him right away and I'm like This guy's like everything. We still talk about it. He's just incredible incredible incredible person. Well we can tell stories about him later. But you know he told me that basically the next step if you choose to do it is it's a it's a procedure called micro testes surgery which is basically what they do is they go and they cut both of your you know if your testicles open you're under for about four or four and a half hours. When we first thought about it I was like 2 hours. Oh that's right. He did say about an hour and a half hour situation. Yeah. It's 50 percent success rate. So you know what they do. They open both testicles up. They they basically look around in a microscope and look around for sperm. And you just keep looking around for sperm. They find it they can extract it and they can use that to fertilize an egg. You know theoretically that's that's what could happen. It's risky that there could be long term complications from it. So Cassie I talked about it. I made up my mind as soon as he even told me about the operation. I'm like Oh we're we're getting this done. And really because for me I need a final answer. I could I would never want to go through life wondering maybe there is one in there two in there that I could have used with this surgery. You know I needed to like. Know for sure. And and you know I remember telling him you know as soon as we we talked and I told him what we need to get it done. That's a hundred percent. Get it done. Was he pushing it or was he like saying this is a good idea now should do. Furthest thing from it. Right. I mean manager what was your take on it. I mean I I had reservation I think just from an emotional standpoint feeling like what with what with that. Well I guess physiologically to you like what would that be like to be in excruciating pain from a surgery. No. My fantasy is to have you know the disappointment of what that could feel like. But no. Our doctor was very kind. You know just in every way as far as this is what it's going to be and and understanding to the point where he really encouraged me to have a support person I asked for a while I waited. And I would have never thought to go because like I said I kind of thought of it more from what you were going to experience and not for myself but I needed my support person there and I'm so glad that she was. I mean I would have it would have been so. So from every angle he was kind and supportive and understanding of whatever he could possibly lose the financial situation there. The good issue wasn't covered by the circumstances of my career. The surgery was covered. Yeah didn't have to go through the financial burdens yet worries about that. This is more than I remember. We did check on it. I remember calling. I remember being play exactly where I was I was on 10th and 11th and Fitzwater on the phone with Aetna asking then is micro testes surgery covered under our insurance. She's like I've never heard of micro testes surgery. Trust me it's real. I need you to look it up for me. She felt like Kentucky. Exactly like the bell like protests and call. Hello. What is your idea again. So I. So she was off for like a couple of minutes and she got back on to say OK I found micro testes. She's I guess it is covered it's covered. I'm. Like. When it suits me. I had surgery October 16th 2013 was under 4 1/2 hours and up in besos I as soon as I got out of it I asked the doctor was right. Actually I'm sorry the nurse was right there. And the first thing I just said was Did it work. And you say it's OK you know that the doctor is going to be your enemy. That's going to be a very rare bit of work and work. I get asked that. And then the doctor came over and. I said Hey man did it work. And he was like no I'm sorry I didn't. And that was probably the most emotional you know. And then when Cassie came over that was that was probably the hardest. That was it was. I've never experienced a close loss of my life meeting like you know I've lost you know great aunts and your grandparents and stuff like that and never lost a close family member or anything like that. But as far as losses is concerned it was definitely felt like a death you know of some sort. It was a crazy day. My and my best friend came to the hospital and she practically to and. You know I when we first got there and let me become you know like 6:00 in the morning before and. I brought a stack of papers my kids had term papers due at school so I was like going out like this is this is what I have to do anyways. And I spent the first hour doing probably one and then my friend got there and we talked and hung out and tried to pretend like everything's fine. And then the longer it took the longer longer the procedure went on the more I felt nervous that things weren't going well which is as it turns out was what was happening. Our doctor. I can't say enough was so kind and you know he told me frankly and gently and I was just very sweet about it and sympathetic and understanding and it was way way way harder than I was going to be to get that news. But it was also I would say more romantic than our wedding day. Was that moment that we had together and recovery was just like extraordinary commitment. I felt to that moment it was like I don't care what happens. I'm so sorry. You know just feeling so connected to you in that in that moment it was deep it was very very deep. There was not you know nothing quite like it that I've ever experienced in my life of sharing a moment with another human being no matter who it is you know a family member or whatever. We went home that night we picked our sperm donor. From. A crowd back in California because I just did not want one second wasted because I knew going in if this is going to work. We're doing it Sperber 100 percent. And I do not want to rob Cassie of. Being having the gift of childbirth because what my ego says that like it's not your kid it's not your you know your sperm. So you know we have to look for other options. Absolutely not. You know this for just it's it's one of those things that I just is very adamant about so I'd like I just remember I was probably still messed up on medication and stuff like you know but I just I do remember we were sitting on the couch in our apartment and we were just looking to look at it. Sperm donors and sperm donors sperm donors and stuff. So how was recovery. I mean for all the men out there if you ever know what it's like to get punched in that area times that by four hours four hours and it's pain. I've never felt for my life. Let's put it that way. That's some pretty good injuries. But that was it was rough. You can't you know go to the bathroom like everything was like stay up where I can. You just can't get comfortable sitting down standing up. Nothing really gets you. You know what sucks is that Larry. It's a constant reminder. It was a constant reminder for the next you know month of like hey here you go here's this pain. And like is all this shit we had to go through after you had this 4 half hour surgery. Oh by the way it didn't even work you know. So I was prepared for that. You know that I said the doctor did say I had to spend a lot more time with Steve just because I wanted to I really want to you guys to win. I mean we when I was when I was in recovery the. Week I ran out of pain by get in whenever they gave me a week we called him I forget how we were just like hey we just didn't plan it like hey we're about to run now we just like we ran out. And I was still in you know a shit ton of pain and I think I e-mailed him and I was like hey man like I ran out of my pills. Is there any way you can put in a prescription and Cassie will go and grab it. I couldn't walk really or drive a car and Cassie can't go grab it. You know can you just put a prescription in. Well you can pay for painkillers. You can call it a prescription. You have to write it you have to handle it right. Write a script. So we didn't know that. And this guy goes to the pharmacy for it right. Prescription goes to the pharmacy fills it. Wait for it. And it delivers it drives it over to our apartment. I made him dinner that night and I don't know what I'll give you a little bit or just like me. He's. A meat eater. There might be some rice in there. You know I just remember wanting to get back and play basketball so much because I it's my biggest release is playing sports especially basketball and I play basketball college and you know it's a very it's a stress release for me. It's a really really big stress release for me and like not being able to do anything athletic. It's like there's a lot of pent up frustration on top of getting probably the worst news I've ever got in my life. So I remember the one time when I first went back and played basketball for the first time I went probably like two three weeks before the doctor told me that I shouldn't. And I went back and I got hit with the ball right there and I dropped to the ground and no one knew you know because it's very weird to tell people that don't. I don't mind speaking about it like you know never mind speaking about anybody. I mean we met for example I read my first I didn't like it that way by the launch party for like our social media. Yeah. And someone mentioned that you guys had gone to fertility and Steve comes over and he's just like do this for me. This is what happened. And of course in the back of my mind I'm like wait let me get my career out. It's kind of like like you. But they're moving. But the people that play basketball if they're not like my best buddies like 30 guys. That's like. I met them through basketball. So like trying to explain to somebody that I had surgery for four hours on my balls is like Oh why is something wrong with your dick? I’m like no no no. So it was just very very awkward to explain to them you know exactly what what the deal was. But I was just like listen yes because you're not like basically an operation on my balls for 4 1/2 hours. And like I feel to you you know. Yeah right. Exactly. I was like that that hurt really bad. I was still in stitches. I think like maybe five months later we were so excited every time we find one it would pull out. I would feel one. I'm like oh there's still getting like really really good feel like I was like it was like you know at that time it didn't it was always it was it was that was fine. It was all everything was heal properly. Everything was fine. And we I really feel like we're there are stitches in there because like you they when they said they said it was nice of us to solve. Yes. I think is the one that does all that go away. Yes. But there were good and you feel you drew it out. Yes. That it's a little square. So next we we chose a donor. We actually had to use a couple because our first who I felt like was a really good physical match for Steve. We were like two vials of sperm and we bought two vials and then he reached out so that's that's the other complication with sperm donors is you don't have this big unlimited quantity if you want one. You should probably buy as much as you think you mean because they might not be run out. Now how much you like what is the amount that you should be recommended. I remember they recommended three to four vials before. Like going to a tapas restaurant. I know for a person when you go through this whole process you feel like you're in there is a menu for everything there's a menu for IVF There's a menu for you and a cart like it is like if you want to know how tall they are. Can you get this it's not like that but like if you want an updated picture what it looks like now. Wow. Chad it is. I'm sorry but like every look alike you can find out or whatever you know like it's not crazy. Do you think a part of you still find that like even though zero of this stuff like there's still a chance. Like me first guy. Yes. I mean for say 100 percent. I like that. Yeah. Yeah. Well the funny thing is when the surgery was over that well no I don't even think before I actually know no was over they told me that there's a 5 percent chance that you could some point in your life get Sperber. I don't know if they tell you that too like but shit like that works for me. You you be like you tell me that I'm my. That's all I need. And but I don't bank on that like I never I don't like when we have sex I don't go into it like this is to be you know like I know it's never like that but I think it'll gave me a little bit of like hey like. Who knows maybe in 10 years all of sudden like something cool can really happen but it's not. I totally get it. And that's why I went through the operation. You know my final answer Give me my final final go but never like less pressure. I feel like you know because I feel like a lot of couples who go through infertility treatments for years they do have to sort of like functionality to their sex life where is kind of like oh that's out the window for us. It's interesting you know most like me put it back in the fun category of putting it back to a purpose. Totally totally. Yeah. We there's one reason we do this. We want sex to procreate without sex to keep trying keep trying and try and have sex because we love each other and I mean she's really you know that's that's why we do her any like breakdowns or fights or arguments or guiding. But you know with that being the root of the problem or what. What was the root of the craving desire to really grow up knowing. I think definitely there were a lot of I mean yeah a lot of fights with this at the root of the problem especially once we got into the treatments like I was it was like when it got really bad and you know picking a donor all of that I was so impressed with Steve's stoicism and strength and being able to stand by and like move forward with that decision that we made. But. I remember you remember after the first one and he you know I mean he sees this procedure be done not with his sperm in it and it's really emotional really tough. And infuriating that moment. You know that that anger I know isn't like he hates me at the time that's what it feels like and you know like then it he. Well you're not suffering and suffering at some point you feel like you're comparing how much that person is hurting. And that was it's excruciating to hurt like that. And then to feel like your partner is probably feeling the same way you are you can in that way. It's the hardest. Just go back a little bit further. We met in May of 2011 we were engaged in January when we were married by July. So I'm trying to we know we got hit with all this like pretty much almost year one of being just together. Not even forget about the married life just even like knowing each other. On top of that too. We did long distance from May until the day literally they got married. So even the first year that we were together we only saw each other. I mean we talk every day every night but we only saw each other on the weekends and sometimes we have to skip a weekend for something going on. So like to be hit with this and not have years and years of knowing each other and like that security that that embrace knowing that that person is leave or knowing like you know what makes this person to her what you know you don't like it. We never we didn't have the luxury like this is thrown at us very early in pretty massive life life situation just being completely thrown at us right away. And I just don't think that we were prepared for that and we didn't know how we fought. I don't know if you guys understand you know how long it takes a while for you to realize your partner to have a constructive fight like I go for the jugular a lot you know and like I'm terrible I'm terrible at it. I know that. But like I know what she does to like to get to get me in. And I just didn't know you know knowing how to fight. And it sounds crazy like knowing how to fight with your partner is like his take so it really helps. I think we've figured it out almost like we're pretty much there. But like we've come a long way of like understanding what we both need in an argument. And again just it's just from lack of just not knowing each other. Deeply enough to really do that that yeah yeah yeah yeah. And you know that was one part of it a lot of I feel like my anger might have just really came from like you get to have kids and I don't you know it's just not fair. You know what I mean. And. You know and then if I heard her complain about something that's what would send me I'm like How dare you complain. You know we it you know and this would be like if you didn't work. Right. And I'm like will issue have an app that you know like to be sad. She wasn't allowed to be sad because like Lisa you get that. I'd rather be able to even step up and get that. But I can't I'm getting that I'm in the dugout. You know I I can only. Bitch I can't even play right like at least you get to play a lot of arguments centered around that. You know I'm sure I'm sure they're still going to be many tests in marriage over the next hundreds of thousands of years. But we're never going to be up at some point. But the re-up is only for people with azoospermia. He's a very you get to bring it to bring it family wants to bring her up. So Steve and Cassie moved on with their donor sperm and started doing IUI’s. So by the way let's take a pause here. IUI’s are intrauterine insemination. What a fertility clinic will do is they'll follow a woman's cycle monitor them for when they're about to ovulate and then they take prepared sperm that would have prepared me it means that they wash it. They separate the actual semen itself from the seminal fluid and they therefore get the greatest concentration of semen that can get, or in Steve and Cassie’s case prepared means that they took the donor sperm that was frozen and they thaw it and preparing to go into her body. How they do that is they take a syringe and they suck the semen up into the syringe and then they attach it to a catheter, a catheter it's like a flexible plastic tube. They insert a tube through the cervix. So they go through the vagina and then through the cervix right into the uterus and they inject that sperm right into the uterus. And the thought is that if you inject it past the cervix. The theory is that it gives the sperm a head start less swimming to do to reach the egg and increase the chance of fertilization. So this was Steve and Cassie’s next step and it looked like they had their answer and had a plan going forward. But like many people in their shoes even when the sperm is totally fine sometimes what should be an easy fix doesn't pan out the way it's supposed to. Did you at some point have like a conversation to like your you knew what was wrong what was wrong was there was no sperm. You go through this insemination and you just I assume you're just assuming. OK. Well this is fixing the. Yeah. So after like the third or fourth time did the doctor have answers? No I mean they kind of just said you know here your choices IUI or IVF is the next step and I was scared of That. You know it just seems like a lot a lot of fear. With I was like kind of having a miscarriage every month you know. Was it a miscarriage every month. But it was like I had to redo five or six. So. And every month it was like you know like when she would get her period it would be like it was a death you should be devastated. Our lives revolve around this like literally revolved around it. But it really did our our lives was like it was worth it. Infertility and fertility treatments. That's really what it does. So we did we did six IUI. And then after that we did we did an extraction and I think we ended up with six so are our first egg retrieval. We actually donated half of my eggs to get a discount. So you basically like sell your eggs and you get a group. So it's was a long process too because then I have to become an egg donor so you go through extensive screening lots of blood work. I took the personality test. It was like a question that was weird. It was like a psychological exams to pass then. Yeah it was. No it wasn't about 400 or so. Did you hear it it was you either. Know or you didn't go to Harrisburg yet. Eating all the time. I found nothing. So we had to like you have to see a separate person and you pay for that we get up you know. Oh man you so. Went through all of that. I had two miscarriages. So we had to take two chances. I had two miscarriage. We did it all over again and then so that costs you know I wanted that for us but we left off for about we're doing our part at that point I mean to be in probably 12 grand. Yeah. You say that was with that just kind of splitting into grants. Yeah. I remember asking one time if there's financing options and they're like gathering's financing options. Absolutely. And the interest rate was like 12 percent. And I'm like you got to be kidding me like how do you get you know. So we did. So we did. That was the first time we had two miscarriages and then you have to do the procedure all over again. And then that's when we went with the guaranteed program that the fertility company offered. And basically what that is is they they do the extraction and of course this time I mean we get really maybe 20 eggs. First she was hyperstimulated, got Grave’s disease from that which is hyperthyroid had to get her thyroid out after. That program the guaranteed program. Costs. To be 25000 without medication without huge. So probably a smart move 30 to 32000 something like that. She's making some books and grand for that. For all you know we went through 20 eggs. We got 20 eggs 10 made it to day five. So we did of course what happens right. We put one in. She’s upstairs. One time. So the guaranteed program is they do it as many times as you possibly or as many times as it takes to get a live baby in your arms. And of course the first time we did it last year I was going to say that any other day but it's just funny how it works out. Of course we do the guaranteed program and we were guaranteed to be able to get the first time within five years like can we get right here. Steve and Cassie’s daughter Sibi was born about three years after Steve first had his semen analysis. As you can tell we kind of zoom through what it was like for them to go through the first two rounds of IVF have two miscarriages which are never easy before they finally got to where they'd been hoping for since the day they got married. To say this whole thing can be a whirlwind is an understatement. Add to the fact that all this comes up within two years of them meeting each other even after hearing all of this I still can't imagine what it must have been like to just get some kind of lead. Yes it was yes. Now your new parents like it. Oh really. Five years. I just told you a life’s worth of medical issues today. Really like high school sweethearts really the first year didn't even count because like we're a long distance and like we saw each other like it was like literally getting off a train and be like oh my. God it's like party for two days and I only go back to work. Do you know where your new last name day. Oh yeah. That's. Their story didn't end there. Steve certainly struggling with knowing that has his daughter ages she won't look like him and that it's not easy to hear others talk about. But at the same time he's hopeful because he knows he's passing on his personality traits and sometimes when she mimics him at all feels OK. Cassie passed on the graves disease that she developed after IVF to her daughter which required a scary five day stay at Children's Hospital and then had a flare up of a syndrome she's had her whole life called brachial neuritis which I could do a whole separate podcast on as you can tell the story so rarely just end with the arrival of the baby. Thanks to Steve and Cassi for sharing their story. Waiting for babies is produced by me Steven Mavros, music for this episode by Quiet Music for Tiny Robots, Josh Woodward and Chris Zabrieski. If you like what you hear. Please rate us on iTunes and you can always check us out at waitingforbabies.com to find out more, here are extra stories about what the interviews were like and see photos and if you really want to help us keep doing this because we take a lot of time away from seeing patients. Please go to our Web site and click donate. Have a story you want to tell. We now have a contact forum for submissions on our Web site at waitingforbabies.com.

Get a little bonus here at the end. When Laura and I go to interview some of these couples we always tend to bring a bottle of wine with us and not everyone opens the bottle of wine. But in this case Steve and Cassie did and we had a little surprise when we opened the first bottle of wine to start drinking. And it kind of interrupted a really intense moment but I just thought I would share. Thanks so much for everything. See you guys next time. 

IVF just scared me. You know it just seems like a lot but I we just don't know.  Um. 

Is that a crystal?  Do you guys you know let's talk reimbursement. Please don't tell me you spent $500 on a bottle of wine. No. Go ahead. Go ahead please. I have no idea. I've never seen that the way rabbit over here to open up the box. 

Just like the ticket I had put in place first time with something that it's really it's really me. I mean we're definitely talking Reserve. What do you think is happening over here. 

This stuff is so funny. 

This audio features the songs "Lullaby for a Broken Circuit" by Quiet Music for Tiny Robots, "Ghost Dance" by Kevin MacLeod, "Readers, Do You Read!?" by Chris Zabriskie, and "California Lullaby (Instrumental Version)" by Josh Woodward, all available under a Creative Commons Attribution license.

Who needs a cork, or a corkscrew for that matter, when there's a crystal glass stopper already on your bottle of wine. 

Without ever trying to get into the fertility field, patients kept pulling me in one by one from my first day in practice.  With a unique vantage point of walking alongside those trying to conceive, often in the fertility clinic with them, I got to experience the hopes, the tears and not least of all the foibles and surreality of the process. 15 years later, the stories just kept piling up, and no one seemed to be telling them.  

This audio features the song "Lullaby for a Broken Circuit" and "Closing Ceremony" by Quiet Music for Tiny Robots, available under a Creative Commons Attribution license.