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A month of movement—across states, across continents, and across ideas—shapes this episode of Heart to Heart with Anna, where personal connection meets the frontiers of heart medicine. We begin with gratitude, travel, and family updates, then explore two breakthroughs shaping the future of congenital heart care: a major open-access study using whole-genome sequencing to forecast outcomes after CHD surgery, and nanotechnology that turns everyday implants into infection-resistant, tissue-regenerating tools.

CHD News Article Referenced:
“Genome sequencing is critical for forecasting outcomes following congenital cardiac surgery,” published in Nature Communications (open-access).
🔗 https://www.nature.com/articles/s41467-025-61625-0

Our guest, Tom Webster, has spent more than two decades showing that the tiniest details can change everything. By adding nanoscale textures to already-approved implant materials, his teams have helped more than 30,000 patients—without a single reported implant failure. Tom explains how these nanostructured surfaces reduce infection without antibiotics, encourage heart and vascular tissue to heal, and speed up regulatory approval by keeping the chemistry the same while transforming the surface.

Together, we explore cardiac patches that act like “Band-Aids for the heart,” vascular stents that resist clotting, and lessons learned from nature’s own antibacterial designs. We also talk about emerging strategies that combine nanomaterials with stem cells—guiding differentiation without drugs and anchoring cells exactly where the body needs repair. And we look ahead to implantable nanosensors that may one day send real-time data straight to your phone, giving families and clinicians a continuous picture of heart health far beyond today’s occasional lab tests.

If you’re curious how genetics, materials science, and continuous monitoring could personalize heart care for people living with CHD, this is the episode for you. Press play, share it with someone who needs hope grounded in evidence, and subscribe for more conversations like this. If this episode moved you, please leave a review and let us know which ideas you’d like us to explore next.

Have a question for Tom?
He welcomes inquiries from listeners who are curious about nanotechnology, innovation, and heart health. Please send your question to [email protected], and I will be happy to pass it along to him.

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What does it take to learn to sit again, then stand, then chase the horizon at the Ironman World Championship? We sit down with endurance athlete and keynote speaker Elmar Sprink to trace the steps from sudden cardiac arrest and seven months on ECMO to a disciplined, data‑driven comeback fueled by routine, empathy, and stubborn hope. Elmar opens up about the invisible work of recovery—why he treated hospital life like a training plan, how a visitor spreadsheet kept his spirits up, and the role therapy and humor played when the outcome was uncertain.

We unpack the nuts and bolts of training after a heart transplant: threshold testing to set safe zones, the difference denervated hearts can make to heart rate response, and why indoor cycling and carefully staged swim returns protect against infection while rebuilding fitness. Elmar explains how steady training lowered his blood pressure and reduced medications, and he shares the small, daily wins—like a perfect cappuccino—that kept his motivation alive. Along the way, he reflects on gratitude for his unknown donor and the ritual of honoring that gift at every finish line.

Anna also spotlights creative sparks and community momentum: new children’s stories in the Living with CHD series that portray everyday family life with honesty, plus highlights from the SV-ONE conference where scientists, clinicians, and advocates collaborate for single ventricle care. We share upcoming inclusion goals, from an ASL episode to a new German episode featuring Elmar, and we talk candidly about organ donation advocacy—what messaging moves people, and how real stories can shift culture and save lives.

If you’re navigating CHD, recovery, or any long road back, this conversation offers a clear playbook: start small, be consistent, protect your body, lean on your people, and celebrate the quiet victories. Subscribe, share this episode with someone who needs a lift, and leave a review with your biggest takeaway—we’d love to hear what small win you’re chasing this week.

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We share community updates and new events, then sit down with Ayrton Beatty to unpack how an antidepressant triggered Long QT syndrome, what symptoms to watch for, and the everyday tactics that keep them safe while honoring Edward’s memory. The conversation blends hard science, lived experience, and practical steps anyone can use to advocate with confidence.

• Red Hat Society join and conference highlights
• Down syndrome and CHD awareness link
• Upcoming Zoom listening session details
• Live recording on transition and life stages
• Ayrton’s diagnosis of drug‑induced Long QT
• Warning signs during exercise and daily walks
• Role of wearables in spotting heart‑rate thresholds
• Tapering off venlafaxine and mental health impact
• Switching to citalopram and ongoing vigilance
• Triggers to avoid including sudden noises and swimming
• Practical safety tips including hydration and potassium
• Advocacy advice and seeking second opinions
• Remembering Edward and hidden electrical disorders

Join us on November 25th, 2025 at 4 p.m. Central Time for a Zoom listening event to hear Ellen Boyer’s episode "Shattering Stereotypes in the World of Down Syndrome and Congenital Heart Defects.” Here is the Zoom link:  https://tinyurl.com/HUGZoomRoom

Patrons, meet us on October 30th at 4 p.m. Central Time for our live recording on "Transition and Life Changes." Here is the Zoom link: https://tinyurl.com/HUGZoomRoom

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What happens when a grandmother's love collides with a broken system? When Christy Pace's grandson Hunter was diagnosed with Hypoplastic Left Heart Syndrome before birth, she found herself thrust into an unexpected role – not just as a supportive grandmother, but eventually as a visionary determined to transform how the CHD community connects.

Our conversation pulls back the curtain on the rarely discussed perspective of grandparents in the CHD journey. Christy's raw honesty about her emotional response – moving from shock to protection, anger to fear – reveals the complex ripple effects when a heart diagnosis enters a family. When COVID restrictions prevented her from being present for Hunter's birth or even meeting him until he faced a life-threatening cardiac arrest at two months old, Christy's determination only grew stronger.

The isolation heart families experience emerged as a central theme in our discussion. As Christy watched her daughter retreat from social gatherings to protect Hunter between surgeries, she recognized a hard truth many relatives miss: this isolation isn't a choice but a survival strategy. "This isn't 'I don't want them to get a cold,'" Christy explains. "This is life and death." Her passionate plea for extended family to keep inviting, even when the answer is consistently "no," offers valuable perspective for anyone supporting heart families.

But what makes this conversation truly special is how personal trauma transforms into purpose. After years of searching for resources to help her daughter and grandson, Christy grew frustrated with the scattered nature of CHD support. Rather than starting another foundation, she's created something revolutionary: CHD Connects Hearts, a distraction-free ecosystem bringing together patients, families, organizations, and researchers in one private community without the noise of advertising or algorithms.

Whether you're a heart parent, grandparent, or supporter, this episode offers both emotional validation and practical hope. As Christy reveals her vision for united progress in the CHD world, you'll be inspired to consider how connection might be our most powerful medicine.

Link to CHD Connects Hearts: https://chdconnectshearts.com/home

Anna's Blog: https://www.heartsunitetheglobe.com/hug-blog/moving-beyond-facebook-joining-forces-with-chd-connects-hearts

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Steven Hutchison has defied expectations his entire life. Born with hypoplastic left heart syndrome (HLHS) nearly four decades ago, he is now a 38-year-old husband, father of three, and full-time worker who approaches each day with remarkable perspective and gratitude.

Diagnosed at two weeks old, Steven underwent staged surgeries including the Glenn and Fontan procedures, and now lives with Fontan-associated liver disease, one of the long-term complications that requires careful monitoring. But his story is about more than medical milestones. Steven shares how living on the same street as his parents and brother has created a strong support system, how he explains his condition to his children with honesty and hope, and how his faith and outlook shape the way he moves through life.

From two 12-hour ablations to participating in groundbreaking research with HeartWorks, Steven’s resilience continues to inspire. His message to parents of newly diagnosed HLHS babies is simple but powerful: there is so much more possibility today than when he was born.

Steven’s story is a reminder that people born with congenital heart disease can build meaningful lives filled with purpose, family, and joy—not despite their condition, but alongside it.

Links to events mentioned in this episode:

Link to register for FON-ONE: https://web.cvent.com/event/80f0addb-25c0-4d87-9cb1-99931b9062db/summary

CNOC Scientific Session: https://cardiacneuro.org/scientific-sessions/

HeartWorks: https://heartworksinc.org/

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Tyler Šajdák wasn't supposed to grow up. Born with hypoplastic left heart syndrome in 1993, he was part of a generation receiving experimental surgeries with uncertain outcomes. Today, at 31, he works as an academic advisor, pursues a master's degree, and serves as a powerful advocate for the adult congenital heart defect community.

"I've been told by people that just by looking at me, they wouldn't know that I had a heart defect," Tyler shares during our conversation. This invisibility is both a blessing and a challenge for the growing population of adult CHD survivors who must navigate a healthcare system still learning how to treat them.

Tyler's involvement with Single Ventricle One (SV1) - the recently unified organization combining pre-Fontan and post-Fontan networks - puts him at the forefront of efforts to improve care for adults with complex heart conditions. "I think my role is making sure the other planners are thinking of how the adults can be served as well," he explains, describing how medical conferences historically focused primarily on pediatric care.

Our conversation delves into deeply personal territory as Tyler recounts his experience with vocal cord paralysis following surgery and the profound moment when his grandfather, after suffering a stroke, heard Tyler speak with a full voice for the first time shortly before passing away. We also discuss his recent transplant evaluation, where doctors delivered some surprising news.

For anyone living with CHD or caring for someone with a heart defect, Tyler's story offers both practical guidance and emotional resonance. From balancing health concerns with career ambitions, to finding community with others who share similar experiences, he demonstrates how adults with congenital heart conditions can thrive while helping shape a medical field still discovering what lifelong care looks like for this first generation of survivors.

Connect with the SV1 community through their upcoming patient day in Indianapolis this October - whether you're a patient seeking connection, a parent looking toward your child's future, or a medical professional committed to advancing care standards for this unique population.

Helpful Links mentioned during this episode:

Boston Children's Hospital Single Ventricle Family Day at the New England Aquarium: https://ow.ly/omax50WAN8A

Kristi Pena’s episode about Barth Syndrome: https://www.buzzsprout.com/62761/episodes/398916

Link to register for SV-One Fall 2025: https://www.svone.org/events/fall-2025-learning-session

Link to "The Heart of a Heart Warrior" book series on Baby Hearts Press. Tyler's essay is in Volume One: Survival: https://babyheartspress.myshopify.com/products/the-heart-of-a-heart-warrior-volume-1

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What happens when a tiny heart warrior inspires a movement of love and advocacy? In this powerful conversation, I sit down with Haley Graham, whose daughter Emberly Dawn was born with multiple heart defects, including a rare Taussig-Bing anomaly. Haley takes us through the emotional journey from that first concerning ultrasound to the founding of Embers of Love, a nonprofit that's changing lives across Manitoba.

Haley shares the raw truth of those early days—the quiet car ride home after receiving concerning news at her 41-week ultrasound, being flown from Winnipeg to Edmonton for emergency treatment just days after Emberly's birth, and the month spent in a hotel across from the children's hospital. Her story captures both the inherent isolation of receiving a CHD diagnosis and the profound community support that emerged to sustain them.

The name "Embers of Love" came from a touching observation made during Emberly's hospital stay—that this tiny baby somehow "spreads embers of love to everyone she meets." What began with handmade keychains and candles has blossomed into a significant advocacy organization that's participated in over 35 initiatives since 2023. From donating sound machines to the NICU to organizing craft kits for Heart Camp campers, Haley shows how personal experience can transform into meaningful community action.

Most moving is Haley's reflection on how Amberlee has become "the flame to our family fire," completely shifting their perspective on what matters in life. Her story reminds us that even in our most vulnerable moments, we can find purpose, create lasting change, and spread those precious embers of love to others walking similar paths.

Ready to get involved in supporting the CHD community? Visit www.heartsunitetheglobe.com to learn how you can join our volunteer team and make a difference in the lives of heart warriors and their families.

Links:

Embers of Love: https://www.embersoflove.ca/

World’s smallest pacemaker story: https://tinyurl.com/TinyPmaker

Fascinating article about the history of the Taussig-Bing Anomaly. https://pmc.ncbi.nlm.nih.gov/articles/PMC2801930/

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What happens when your child needs heart surgery, but the operation keeps getting postponed? How do you navigate a complex healthcare system while still supporting other families going through similar struggles? Candice Swartland takes us deep into this reality from Cape Town, South Africa.

Candice's journey began when her son Riley was diagnosed with Tetralogy of Fallot shortly after birth—despite monthly ultrasounds during pregnancy that detected nothing wrong. Through three open-heart surgeries and the constant waiting for a fourth, Candice discovered strength she never knew she had. "Despite whatever you are going through," she shares, "you and your family and your kid with heart disease, you are still there for the next heart parent."

The striking differences between CHD care in South Africa versus more developed nations become clear as Candice describes the waiting game for surgeries, where emergency cases repeatedly push Riley's procedure further down the list. Yet amidst these challenges, something beautiful emerges: a global community of heart families connected by shared experiences that transcend borders.

Perhaps most inspiring is how Riley defied medical expectations. Doctors predicted he would never attend a normal school, yet today he's a top student in his class. Even more remarkable, both Riley and another heart warrior have become advocates themselves, running awareness programs at their school.

This conversation reveals the universal truths of the CHD journey: the fear, the faith that sustains us, and the power of community. As Candice powerfully states, "Your child is my child. Together, we are one." Her words remind us that whether in South Africa or anywhere else in the world, heart families share a profound connection that makes us stronger together.

Links discussed in the episode:

The Cure Gala: https://www.buildingthecure.org/events

Brave Little Hearts South Africa: https://www.facebook.com/BraveLittleHeartsSA

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Monique Kemp's world turned upside down when her unborn son was diagnosed with an interrupted aortic arch at seven months of pregnancy. What followed was a harrowing journey through six open-heart surgeries, months of hospitalization, and the birth of something unexpected – a powerful vision for supporting other families facing similar challenges.

From those early days sitting beside her newborn's hospital bed to founding Heart of Hope-Cape Town, Monique shares with raw honesty how she transformed her personal pain into purpose. Her support group, now running for 12 years, fills a critical gap she identified during those long hospital stays – medical staff trained to heal bodies, not necessarily to hold space for parents' emotional trauma.

The conversation takes a dramatic turn when Monique reveals how her maternal instinct potentially saved her son's life. As Daniel entered his teen years, his complaints of pain were repeatedly dismissed as psychological by doctors who had known him since infancy. Only after switching to a new pediatrician did they discover his heart conduit had grown down into his stomach, displacing organs and causing genuine physical distress. This experience highlights a dangerous blind spot in CHD care–the critical transition period between ages 10-21 when patients are most likely to fall through the cracks.

Perhaps most eye-opening is Monique's perspective on global CHD care disparities, comparing attitudes toward heart interventions between North and South India, and advocating passionately for what the CHD community needs most: to become "one voice" as prominent as the condition itself, which remains the number one birth defect worldwide.

Whether you're a heart parent seeking community, a medical professional wanting deeper insight into patient experiences, or simply someone interested in how personal tragedy can transform into powerful advocacy, this conversation will leave you understanding why the CHD journey requires both medical expertise and emotional support that only other heart families can truly provide.

Links Mentioned in the Episode:

Top 20 Congenital Podcasts: https://podcast.feedspot.com/congenital_disorders_podcasts

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

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From a family vacation that turned tragic to the creation of Pakistan's first specialized children's heart hospital, Ana Tanveer Abdullah's journey illustrates how profound loss can spark transformative change.

When Ana's athletic, academically gifted brother Daniel collapsed unexpectedly at age 15, no one suspected a heart condition. Despite receiving a pacemaker after being diagnosed with cardiomyopathy, Danial passed away at 16 while awaiting a heart transplant in India. This devastating loss became the catalyst for an extraordinary mission.

Together with her father and Farhan Ahmad (who also lost a child to congenital heart disease), Ana founded the Pakistan Children's Heart Foundation with an ambitious vision: to build the country's first specialized cardiac hospital for children. Through innovative fundraising campaigns inspired by Danial's athletic spirit and tireless advocacy, they've now achieved what once seemed impossible.

The Children's Heart Hospital opens in Lahore this April, eliminating the need for Pakistani families to seek expensive treatment abroad. Beyond the physical facility, their "Project by Danial" trains young cardiologists and surgeons specifically in pediatric cardiac care, ensuring sustainable healthcare improvements throughout the country.

Ana's story reminds us of the remarkable resilience of the human spirit. "We are trying to find peace in this world," she reflects. "He had already found his peace." Through their foundation's life-saving work, Danial's legacy touches countless families across Pakistan, transforming one family's grief into hope for an entire nation.

Join our community and discover how you can support organizations like the Pakistan Children's Heart Foundation that are changing the landscape of pediatric cardiac care worldwide.

Link to Global Cardiac Alliance: https://cardiac-alliance.org/

Link to the Heart to Heart with Anna episode featuring Farhan Ahmad: https://www.buzzsprout.com/62761/398968-a-miracle-in-pakistan

Pakistan Children's Heart Foundation (PCHF): https://pchf.org.pk/

Project Danial: https://pchf.org.pk/cause/project-danial/

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What happens when you've spent your whole life thinking your heart condition was "fixed," only to discover it's actually a lifelong journey? Elle Pendrick shares this profound revelation that came after her fourth open-heart surgery, forever changing how she understood her congenital heart disease.

Born in 1983 with complex CHD in rural Australia, Elle's early years were defined by long journeys to Sydney for medical care. Growing up as the only person with a serious cardiac condition in her small town of Wagga Wagga created an isolating experience—one that shaped her understanding of her own health. The shocking realization at age 21 that her heart disease was not cured but rather a lifelong companion became a turning point in her identity and purpose.

Elle takes us through her remarkable transition from viewing CHD as something to hide to embracing it as part of her story. Her evolution into advocacy work led her to help develop Australia's groundbreaking Standards of Care for Childhood Onset Heart Disease, which includes world-first mental health and neurodevelopmental standards. This unified approach shows how Australia's tight-knit CHD community has created comprehensive care models that focus on whole-person wellness rather than just cardiac function.

The conversation explores fascinating comparisons between Australian and American healthcare systems, drawing from Elle's recent visit to the United States. Her insights reveal how different funding models, advocacy approaches, and support organizations shape patient experiences despite serving the same medical needs. Elle's perspective offers valuable lessons for anyone interested in healthcare policy and patient advocacy.

Most powerfully, Elle describes transforming her medical journey into resources for others. Her book "Your Ultimate Surgery Success Guide" and her platform "Adulting Well" address practical challenges faced by those with chronic conditions—from workplace conversations and financial planning to mental health support. By sharing her expertise on navigating healthcare systems, Elle demonstrates how lived experience becomes a powerful tool for helping others.

Join us for this inspirational conversation about resilience, advocacy, and finding purpose through personal challenge. If you're facing a chronic health condition or supporting someone who is, Elle's wisdom offers both practical guidance and heartfelt encouragement.

Global ARCH’s leadership training opportunity: 

https://global-arch.org/advocacy-training/ 

Elle’s Book on Amazon: https://www.amazon.com/dp/B0DCV2TCQZ

Elle’s Website: https://www.adultingwell.au/

Elle’s Blog: https://www.adultingwell.au/Blog

Elle’s Instagram: https://www.instagram.com/adultingwell/

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