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When Hope's first breaths were intertwined with the whispers of uncertainty, my world changed. As a heart mom, each Mother's Day is not just a celebration but a milestone, reflecting the grit and grace it takes to raise a child with a congenital heart defect. Join me, Anna Jaworski, in an episode where we explore the deep emotional landscapes of mothers like me. We'll traverse the highs of motherhood, the lows of fear, and the battles that come with CHD, all through the lens of Mother's Day. Discover how stories of resilience echo through our community, offering wisdom and celebrating the spirit of heart moms everywhere.

This episode isn't just about my journey; it's a chorus of voices from the heart mom community, sharing their own powerful narratives. Together, we recognize the role of pediatric cardiologists and the medical community in bolstering our strength, and we honor the courage required to let our children forge their own paths. Hear from fellow heart moms as they speak candidly about their experiences—moments of profound loss and the critical importance of support systems. It's an ode to the unwavering courage of families facing CHD and a beacon of hope for those who will join our ranks. Celebrate Mother's Day with us, and feel the solidarity of heart moms united by love and resilience.

Special thanks to Hollie Stephenson, Regina Lawrence, Sheri Turner, Eileen Pearlman, Victoria Baerg, and Kimberly Russell for sharing their experiences, memories and/or advice with us.

Sites or shows mentioned in this episode:

Hollie's show: https://www.buzzsprout.com/62761/14985018
Baby Hearts Press: https://www.babyheartspress.com/

Become a subscriber: https://www.buzzsprout.com/62761/support

We appreciate it when people support Hearts Unite the Globe podcasts. Thank you to our newest supporters -- Annie Ulchak (Patreon) and Judy Miller (Buzzsprout)!

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Baby Blue Sound Collective

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When my daughter Hope graced the podcast with her presence, her story wasn't just a chronicle of living with a single ventricle heart at 29—it was a profound testament to her strength amid her gender transition. Our conversation unveils the seamless integration of her heart health with her journey of self-discovery, all while providing tangible advice for those who feel the pull of the pen and the thrill of authorship. Hope's insights on her upcoming book light the way for aspiring writers, proving that even with life's hurdles, one's voice and story are paramount.

Flipping through the pages of Hope's past, we're reminded of the days when storytelling was a fledgling passion, cultivated through pen pals and children's magazines. The revelation of a bucket list in college sparked a monumental shift from engineering to writing, a decision that charted the course for my current literary adventures. Sharing these moments isn't just about nostalgia—it's about tracing the delicate threads that weave together to form a writer's identity, culminating in the excitement of discussing her latest book.

For anyone out there who's ever doubted the path of a writer, let this episode serve as a beacon. We'll journey through the landscape of crafting narratives, the role of supportive writing communities, and the reality of financial expectations in the writing world. The serendipity of connecting with a publisher keen on LGBT+ stories is a reminder that sometimes, the stars align in unexpected ways, providing the chance to see one's work in the hands of eager readers. Join us for a heart-to-heart that celebrates the written word and the unwavering spirit of those who dare to write it.

Hope's previous Heart to Heart with Anna Appearances:

Congenital Heart Defects and Gender Identity: https://www.buzzsprout.com/62761/11506572

Celebrating 300 Episodes of “Heart to Heart with Anna"
https://www.buzzsprout.com/62761/8240177

Sports and Extra-Curricular Activities for CHD Survivors
https://www.buzzsprout.com/62761/398939

Surviving a Long Hospital Stay
https://www.buzzsprout.com/62761/398934

Writer's League of Texas Agents and Editor's Conference (2024)
https://writersleague.org/calendar/2024-agents-editors-conference/

Armadillocon (2024)
https://armadillocon.org/d46/

Rattling Good Yarns
https://rattlinggoodyarns.com/

Slug Tribe
http://www.slugtribe.org/

We appreciate it when people support Hearts Unite the Globe podcasts. Thank you to our newest supporters -- Annie Ulchak (Patreon) and Judy Miller (Buzzsprout)!

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Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

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Witnessing your child's bravery and resilience as they navigate a life-altering condition like hypoplastic left heart syndrome (HLHS) is both harrowing and inspiring. Hollie Stephenson joins Anna to share the profound story of her son Tom, who not only fought through the early challenges of HLHS but also the complex battle with protein-losing enteropathy (PLE) in his later years. Her vivid accounts from Tom's diagnosis in utero, through his surgeries, and onto his impressive transition into adulthood, working in politics, is nothing short of remarkable. Their journey underscores the unpredictable nature of congenital heart defects and the critical importance of vigilant medical care.

Through Tom's story, we uncover the myriad of long-term treatments and daily hurdles that come with managing PLE. We discuss the innovative treatments at the Children's Hospital of Philadelphia (CHOP) that led to significant improvements in his health and share insights from another patient's experience where a medication for Crohn's disease offered unexpected relief. These narratives illuminate the evolving field of pediatric cardiology and the crucial balance of medication management, driving home the message that children with heart conditions can and should lead full, joyous lives.

Parenting is an art—especially so when your child has a heart condition. Our conversation traverses the delicate art of letting go, allowing our children to taste independence and embrace life's experiences, from participating in sports to taking on careers. We explore the shift from advocacy to supporting our children's autonomy, the complexities of medication management into adulthood, and the emotional journey that comes with each milestone. Hollie and Anna share their personal challenges and triumphs, offering a heartfelt insight into what it means to parent through uncertainty with hope and courage. Join us for an episode that's not just about the struggles, but also the extraordinary victories that come with raising a child with a heart condition.

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Baby Blue Sound Collective

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When your child's heartbeat is a symphony laced with irregularities, every moment becomes a measure of uncertainty. This is the world heart moms like myself, Anna Jaworski, and my guest Kelsi Rogers live in every day. Join us as we peel back the curtain on the mental marathon of raising children with congenital heart defects (CHD). Our raw conversation plunges into the depths of hypervigilance, the delicate nature of our children's health, and the language that both describes and defines their conditions. Sharing from our hearts, we expose the often-unspoken mental toll of the constant fear and the struggle to find a semblance of normality while fiercely protecting our children's lives.

The battle doesn't end with personal struggles; the war against CHD is fought on the frontlines of research and advocacy as well. In this heartfelt exchange, Kelsey and I explore the gap in CHD research funding and the misleading statistics that mask the true prevalence of these heart conditions. We dissect the critical need for comprehensive newborn cardiac screening to catch these silent afflictions early, recounting stories that underscore the urgency and importance of this cause. Our plea for increased education and advocacy rings clear, with a hope to catalyze change in how CHD research and screening practices are approached and executed.

Concluding on a note of hope, we cast a light on initiatives forging paths towards groundbreaking treatments, including the exciting prospects of in-utero solutions and the creation of privacy-preserving registries for targeted research through HeartWorks. By sharing personal anecdotes, we underscore the severity of electrical heart issues and rally for greater support and recognition. It's not just a podcast; it's a community coming together every Tuesday at noon Eastern time, sharing a commitment to empower and support the CHD community. Your participation breathes life into our mission, reinforcing the collective heartbeat of families touched by congenital heart disease.

Links mentioned in this podcast:

HeartFelt: https://www.facebook.com/heartfeltscreening
Tiny Tickers Trot: https://runsignup.com/Race/Events/CA/Chico/TinyTickersTrot

HeartWorks: https://www.hlhsconsortium.org/heartworks/

Become a Supporter of the Podcast: https://www.buzzsprout.com/62761/supporters/new

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Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

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This episode of "Heart to Heart with Anna" features a very special heart mom. Kelsi Rogers talks about the surprising circumstances around her son's heart condition. Born with an electrical problem in his heart, Jett has already faced life-and-death situations several times in his short life. Not even three years old yet, he has undergone an ablation and an open-heart surgery.

Tune in to find out what kind of heart defect Jett has, why the ablation was so extensive, and what kind of surgery eventually saved his life.

Following the interview with Kelsi Rogers, co-editors Megan Tones and Anna Jaworski read the last half of Chapter Seven: Facing My Mortality from their new book The Heart of a Heart Warrior Volume Two: Endurance.

Links mentioned in this podcast:

HeartFelt: https://www.facebook.com/heartfeltscreening
Tiny Tickers Trot: https://runsignup.com/Race/Events/CA/Chico/TinyTickersTrot

Baby Hearts Press: https://www.babyheartspress.com (for more information on the book The Heart of a Heart Warrior and more!)

To sign up for a Baby Hearts Press Book Study, visit our website here: https://www.babyheartspress.com/volume-2

Become a Supporter of the Podcast: https://www.buzzsprout.com/62761/supporters/new

Support the Show.

Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

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As an author myself, I understand the power of stories to heal and inspire. That's why I'm thrilled to introduce Deanna Altomara, who created "Chrysalis," a book to help people facing open-heart surgery. Born with a congenital heart defect herself, Deanna understands what it means to have had open-heart surgery. Deanna's tale is a testament to how health education and storytelling can intertwine to provide solace and strength to those facing similar battles.

Navigating the complex maze of medical procedures and developmental disabilities can be daunting for teens and their families, but this episode illuminates a path of understanding. It was essential for Deanna to create a book for her cousin, who was born with a heart defect and who also deals with developmental disabilities. We delve into the meticulous creation of age-appropriate resources that educate and resonate, merging factual information with fun. Discover how collaboration with an illustrator brought forth a book that captivates without patronizing, and how such tailored storytelling can touch the hearts of its readers and bridge significant gaps in resources.

Rounding out our heartfelt talk, we share insights into the creation of indispensable tools that guide parents through the intricacies of surgeries and special needs.

In the third segment of the podcast, you'll hear my co-editor Megan Tones and me, as we continue reading from The Heart of a Heart Warrior Volume Two Endurance. This week, we cover the first half of Chapter 7 which includes David Franco's harrowing recovery journey which underscores the essence of resilience. This chapter is entitled "Facing My Mortality" and you'll hear essays by Becca Atherton as she confronts life's fragility and her impending mortality. We also hear from Margaret Raymond as she describes how her mental health has been challenged over time due to living with her congenital heart defects. Despite the inevitable, we find a collective strength in this chapter.

Join our supportive community, where every Tuesday, we offer a dose of inspiration and the comforting reminder that no one walks this path alone.

You can find Deanna on @d.scribing.stories on Instagram and https://deannaaltomara.com

To sign up for a Baby Hearts Press Book Study, visit our website here: https://www.babyheartspress.com/volume-2

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Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

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When Ellen Boyer's voice joins the conversation, the room lights up with an array of heartfelt stories and powerful messages. Together, we celebrate World Down Syndrome Day by shattering stereotypes and trumpeting the accomplishments of those with Down Syndrome. From the awe-inspiring feat of Chris Nikic, the first athlete with Down Syndrome to conquer an Ironman triathlon, to the everyday triumphs of individuals leading vibrant, fulfilling lives, our dialogue serves as a rallying cry for inclusion and appreciation of every person's inherent worth.

The legacy of Brett Boyer shines on, as we discuss the foundation in her memory that advocates for CHD research and support, reminding us how one life can ripple through the hearts of many.

Co-editors Megan Tones and Anna Jaworski continue reading from The Heart of a Heart Warrior: Volume 2: Endurance.

Motherhood, with all its joys and challenges, takes on profound new dimensions when interwoven with congenital heart defects (CHD). The narratives of Megan Hanshew, Gwenyth Murphy, and others paint a poignant picture of resilience and transformation. We also celebrate the active lives of those like Tracie Wendorf-Salgado, living with pacemakers yet refusing to be held back, and Kimberly Russell, whose journey through CHD led to the joyous adoption of her daughter.

Join us for an episode that's as much about courage as it is about compassion. Hear the raw, unfiltered experiences of those who not only survive but thrive despite the presence of CHD. Be inspired by Kimberly Russell's volunteer work in education advocacy, and be moved by Tracie Wendorf-Salgado's near-miss on the highway, a stark reminder of the fragility of life and the indomitable human spirit. This is an ode to the tenacity of the heart, both literal and metaphorical, and an invitation to walk alongside these extraordinary individuals through their remarkable journeys.

Links mentioned in this episode:

The Brett Boyer Foundation: https://www.thebrettboyerfoundation.org/

Baby Hearts Press: https://www.babyheartspress.com

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Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

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When Ellen Boyer graced our show with her story of love and resilience, it was clear that her daughter Brett, who blessed the world with her presence despite Down syndrome and a congenital heart defect, has sparked a legacy that transcends every stereotype. Through the Brett Boyer Foundation, Ellen's dedication to challenging limitations and advocating for CHD research is a beacon of hope that lights up our latest episode. As we celebrate World Down Syndrome Day, we invite you into our heartwarming discussion and extend an open hand for you to join us in spreading the message for World Down Syndrome Day: Stop the Stereotypes.

In the 2nd and 3rd segments of the episode, you'll hear co-editors Megan Tones and Anna Jaworski reading from The Heart of a Heart Warrior Volume 2: Endurance. This week they're reading essays from Chapter 5 in anticipation of the next Baby Hearts Press Book Study, which starts on World Down Syndrome Day (March 21st) from 5-6 PM USA CDT.

It's the personal journeys that often strike the deepest chord, and this chapter resonates with stories of tenacity and the transformative power of companionship. Listen to the heartening tale of Monica Mossey and her service dog Jax, whose bond exemplifies the extraordinary support that can come from our four-legged friends. The courage of Tracey Grasty, through multiple heart surgeries and life's relentless challenges, will remind you of the strength that lies within our community, and the remarkable resilience we can muster when faced with life's daunting obstacles.

We round out the conversation by stepping into the shoes of those whose professional lives are shaped by their personal experiences with congenital heart disease. From Victoria Scoggins' journey into healthcare administration to Megan Tones' research in rare diseases, these narratives showcase the depth of impact that personal health can have on career choices and the contributions these individuals make to the healthcare field. We end the chapter with an essay by heart warrior and nurse, Roslyn Rivera--a nurse whose practice spanned the globe. As your host, Anna Jaworski, I'm here to reaffirm that the power of advocacy and community is just a heartbeat away, and together, we can navigate the landscapes of the heart with courage, dedication, and hope.

Websites mentioned in this episode:

Baby Hearts Press: https://www.babyheartspress.com

The Brett Boyer Foundation: https://www.thebrettboyerfoundation.org/

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Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

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In this episode of Heart to Heart with Anna we welcome Frank Jaworski back to the program. Frank shares information about anesthesia when patients go to the electrophysiology lab (EP lab), especially when they need to undergo an ablation.

Frank is a certified, registered nurse anesthetist (CRNA) and he has been delivering anesthesia for over 23 years. One of his favorite departments to work with is the EP lab. In this episode, Frank shares some tips to help those in the congenital heart defect community reduce their concerns when visiting the EP lab, he offers some helpful questions patients can ask their anesthesia providers, and even shares some tips for how to reduce anxiety during their EP visits.

The 2nd and 3rd Segments involve Anna reading from The Heart of a Heart Warrior Volume Two: Endurance.  This is one of the newest books from Baby Hearts Press. This is the second in a 3-book series of essays and works of art by adults with congenital heart defects.

In this podcast episode, Anna will read from the front matter of the book, including the Foreword, Preface, and Introduction.

Baby Hearts Press is hosting a Book Study for those interested in meeting some of the contributors to ask questions, as well as an opportunity to share their own experiences related to the topics discussed in the book. The Book Study for Volume Two begins on Thursday, March 24th from 5-6 PM Central Daylight Savings Time and runs for 4 consecutive Thursdays. To get a ticket to attend for only $10 per session, visit https://www.babyheartspress.com.

Support the Show.

Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

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When Megan Houpt made the heart-wrenching decision to pursue adoption over pregnancy due to her heart condition, it struck a chord with me as a heart mom. Together, we unfold her narrative in this episode, navigating the complexities of adoption with a CHD. From the intricate dance of home studies to the emotional synergy with a birth mother, we journey through Megan's path to motherhood. The adoption landscape can be arduous, yet it's traversed with hope and culminates in the joyous arrival of Hunter Hart, a name rich with significance. (https://www.facebook.com/HLHSMeaganHoupt)

In the second segment of the podcast, we continue reading from The Heart of a Heart Warrior Volume One: Survival. This week, we complete Chapter 3: Being Active with CHD.

The courage of those facing congenital heart defects takes center stage as we share stories of triumph and transformation. Hear how heart warriors like and Alicia Lynch and Megan Tones find ways to be active, despite having complex congenital heart defects.

Megan takes us on an Egyptian odyssey that defies the ordinary. Imagine scaling Mount Sinai and wandering amidst ancient temples, all while balancing the intricacies of medical needs with the thrill of adventure. Her narrative captures the essence of wanderlust, peppered with humor and humanity, proving that even with health challenges, the zest for exploration knows no bounds. Alicia inspires us with her journal entries which lead us from a time of despair to a time of rejoicing.

In Chapter 4: CHDs Around the Globe

Amy M. Le, Ellen Banoub, and Belen Blanton channel their battles into creating waves of change and offering a helping hand to others within the CHD community. Amy's pivot from a tech giant to a champion for indie writers, Ellen's leap from a CHD survivor to a beacon of support, and Belen’s recounting of finding God’s mission for her showcase the remarkable resilience and tenacity inherent in our human spirit.

Join us, and let these tales of bravery, resilience, and the indomitable will to embrace life’s adventures inspire you.

We appreciate it when people support Hearts Unite the Globe podcasts. Thank you to our newest supporters -- Annie Ulchak (Patreon) and Judy Miller (Buzzsprout)!

Support the Show.

Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

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Send us a Text Message.

Navigating life with congenital heart defects (CHD) is a journey of resilience and emotional fortitude. As I converse with my fellow heart mom, Rita Scoggins, we unearth the layers of complexity that come with raising adult children affected by CHD. This episode goes beyond the clinical; it’s an intimate foray into the emotional and logistical preparations for life's greatest certainties, including power-of-attorney arrangements and will preparations, while also considering the implications for our adult children and beloved pets upon our passing.

Segment 2 showcases co-editors Megan Tones and Anna Jaworski reading Chapter 2 of The Heart of a Heart Warrior Volume One: Survival

The heart of the chapter beats to the rhythm of personal stories that exemplify the myriad ways individuals with CHD find identity and purpose. From Hope’s inspiring transition and embrace of her true self as a transgender woman, to Jason Crutchley's dedication to volunteerism, and Christie Sillman's leap into a nursing career, these narratives are a testament to the strength found in the CHD community. These journeys illuminate how our warriors, often dubbed so for their battles against physical conditions, also strive for agency and the power of choice in defining their lives.

Segment 3 showcases the first two essays from Chapter 3 of The Heart of a Heart Warrior Volume One: Survival

Physical activity, often seen as a mountain too high for those with CHD, emerges as a pinnacle of personal triumph in these essays. Lorrie Hill's career pivot, and Michael Hills' adaptation to sports outside his initial dreams, are stories that underscore the tenacity of the human spirit. These anecdotes are not just about overcoming limitations, but about redefining personal goals and embracing one's passions, all while living with the realities of a congenital heart condition. Join us for this heartfelt exploration of life's challenges and victories.

Won’t you join us while we discuss these essays in our next Book Study? Co-editors Megan Tones and Anna Jaworski are joined by contributors to the book and others who want to discuss the topics raised in the book. These 1-hour sessions take place on Zoom. Visit Baby Hearts Press for more information.

Did you miss hearing Chapter One or the Front Matter of the book? Here are the links:

Front matter (Foreword, Preface, and Introduction): http://tinyurl.com/H2HwAnnaE434

Chapter 1: http://tinyurl.com/H2HandChapter1

We appreciate it when people support Hearts Unite the Globe podcasts. Thank you to our newest supporters -- Annie Ulchak (Patreon) and Judy Miller (Buzzsprout)!

Support the Show.

Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

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