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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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A broken wrist serves as an unexpected metaphor for the heart warrior's journey in this illuminating conversation with fundraiser and podcaster Amy Earhart. When Anna's recent accident left her with a titanium plate and a new perspective on recovery, it highlighted the resilience that characterizes the CHD community—adapting when our bodies say "enough" and finding creative ways forward.

Amy Erhart brings this resilience to life through her remarkable story. Born with hypoplastic left heart syndrome in 1983, she's channeled her experience into creating meaningful change. Her "Putt Around Kalida" fundraiser transforms her small hometown into a mini-golf adventure where local businesses design elaborate putting greens—from a smoking firehouse to a church model that's been preserved for generations. What makes this event special goes beyond the $20,000 raised; it's the photos of local CHD children displayed at the town park, creating powerful moments of recognition for families still processing their diagnosis.

The conversation shifts to Amy's podcast journey with "Diaries of a Heart Warrior," where she's published over 30 episodes—far surpassing the six-episode mark where most podcasters abandon their shows. Through these conversations, Amy found the connection she'd been missing: "I didn't know a lot of people with CHD until these last couple years. This is how I'm finally meeting people." These exchanges have brought validation that she's not alone in her complex feelings about life with a congenital heart defect.

Perhaps most meaningful is Amy's approach to fundraising, focusing on direct support for families rather than solely research: heart camps for children, gas money for hospital trips, hotel accommodations during treatments. It's a philosophy born from understanding that while research is crucial, the day-to-day needs of families navigating CHD require immediate attention.

Have you experienced the power of community support during health challenges? Listen now and discover how small towns and big hearts are creating meaningful change for CHD families everywhere.

Amy Erhart's podcast, "Diaries of a Heart Warrior": https://www.buzzsprout.com/2268461

Anna's CHD Connects Hearts link: https://chdconnectshearts.com/products-list?am_id=annajaworski3819

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In dieser speziellen deutschsprachigen Episode von 'Herz zu Herz mit Anna' spricht Jodi Alderfel mit Marina Lohri, die mit Trikuspidalatresie, ASD und VSD geboren wurde und eine modifizierte Fontan-Operation überlebte. Marina teilt ihre lebenslange Reise, von ihrer Herzoperation als Baby bis hin zu ihrer Karriere bei atHeart Medical, einem Unternehmen, das Geräte zur Behandlung von ASD entwickelt. Die Episode erörtert auch Marinas Erfahrungen mit Vorhofflimmern und einer Ablation im Jahr 2018. Marinas persönliche und berufliche Erfahrungen bieten wertvolle Einblicke für andere Patienten mit angeborenen Herzfehlern und zeigen, wie sie durch Mut und Entschlossenheit ein sinnvolles Leben führt.

(Besonderer Dank geht an Jodi Alderfel, die uns in dieser Folge als Gastmoderatorin zur Seite stand.)

In this special German-language episode of 'Heart to Heart with Anna,' Jodi Alderfel speaks with Marina Lohri, who was born with tricuspid atresia, ASD, and VSD and survived a modified Fontan procedure. Marina shares her lifelong journey, from her heart surgery as a baby to her career at atHeart Medical, a company developing devices to treat ASD. The episode also discusses Marina's experience with atrial fibrillation and an ablation in 2018. Marina's personal and professional experiences offer valuable insights for other patients with congenital heart disease and show how she leads a meaningful life through courage and determination.

Here is a link to Marina's episode in English with Anna: https://tinyurl.com/Marina-Lohri

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The journey of raising a child with a critical congenital heart defect (CCHD) involves navigating far more than just medical challenges. Behind every heart surgery and cardiology appointment lies a complex web of developmental considerations that can profoundly shape a child's future.

Dr. Dawn Ilardi, a clinical neuropsychologist with over 16 years of experience in cardiac neurodevelopment, brings clarity to this often-overlooked aspect of heart care. Unlike typical developmental patterns, children with CCHDs may present with scattered strengths and weaknesses that don't fit neatly into standard diagnostic categories. While some may develop recognizable conditions like ADHD, autism, or dyslexia, others show unique profiles that require specialized understanding.

The conversation explores the fascinating heart-brain connection, revealing how brain development begins simultaneously with heart formation during fetal development. Structural heart defects can affect blood flow patterns to the developing brain, while surgical interventions carry risks of small strokes or other brain injuries. For parents wondering why their child struggles with handwriting, speech delays, or learning difficulties despite excellent medical care, this discussion provides crucial insights.

Particularly compelling is the discussion about balancing protection with developmental progress. How do you navigate the tension between keeping a medically fragile child safe while ensuring they develop age-appropriate skills and independence? Dr. Ilardi offers practical strategies for finding this balance, emphasizing the importance of creating a supportive "village" around both the child and parents.

Whether you're a parent, medical professional, or educator working with heart warriors, this profound conversation will transform your understanding of the developmental journey these remarkable children face. Most importantly, you'll discover pathways to help them reach their full potential through multisensory learning approaches, compensatory strategies, and family-centered support.

Helpful Links:

Christy Pace's CHD Connects Hearts: https://chdconnectshearts.com/home

Dawn Ilardi's other Heart to Heart with Anna Appearances:

Unlocking Neurodevelopmental Breakthroughs: Impact of CHDs and Parental Influence https://www.buzzsprout.com/62761/episodes/15872291

What is Normal Child Development in Children with Complex Congenital Heart Defects? https://tinyurl.com/DawnIlardi2014
 
 Dr. Ilardi's website: https://www.pedneurocenter.com
 
 Dr. Ilardi's email: [email protected]

Gastrointestinal Issues and Feeding Tubes in the CHD Community: https://www.buzzsprout.com/62761/episodes/1999819

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When Sara Bonneau's newborn son was diagnosed with Tetralogy of Fallot, she had no roadmap for the journey ahead. In this raw and powerful conversation, she takes us through the evolution of parenting a child with a serious heart defect—from the terrifying early days without social media support groups to watching her son become a competitive high school basketball player.

Sara's candor about her mental health struggles resonates deeply as she shares her delayed PTSD diagnosis following her son's first surgery. "I experienced a lot of anxiety after Ryan was born. I remember being so scared he was going to die if I let him out of my sight," she reveals, encouraging other heart parents to seek help sooner than she did.

The conversation takes a powerful turn when Sara describes how tragedy became the catalyst for her unexpected advocacy work. After Sara discovered a 15-year-old basketball player in her son's rival team collapsed and died, she discovered there was no AED available that might have saved his life. Despite having no legal background, this special education teacher successfully campaigned for Rhode Island legislation requiring AEDs in all middle and high schools.

Her message to listeners facing their own struggles is beautifully simple: "Your voice matters. I was just a mom. I had a voice. I made a very significant change for student athletes and children in Rhode Island just by sharing my story and speaking from the heart." Sara's journey from terrified parent to legislative changemaker demonstrates how we can transform our deepest fears into purposeful action.

Whether you're a heart parent seeking connection, an advocate looking for inspiration, or someone navigating the healthcare system, Sara's story will remind you of the incredible power one determined voice can have. Subscribe now and join our community of families and professionals dedicated to improving lives in the congenital heart defect world.

Helpful Links:

Diane Pucci's episodes: 

The Miracle of Growing Up with a CHD: https://www.buzzsprout.com/62761/episodes/398967

Voices of Victory: Overcoming Congenital Heart Challenges: https://www.spreaker.com/episode/voices-of-victory-overcoming-congenital-heart-challenges--58745010

Discord Server Link: https://discord.gg/WZwQf7pPM8

CardioHUB 2025 link: https://www.cardiologyconferenceeurope.com/

HUG website link: https://www.heartsunitetheglobe.com

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In this engaging episode of Heart to Heart with Anna, we dive into the significant strides made in pediatric cardiology, focusing on hypoplastic left heart syndrome (HLHS) and the inspiring journey of dedicated professionals like Dr. Paul Grossfeld. This episode highlights the complex nature of congenital heart disease, exploring not just the technical advancements in surgical techniques and post-operative care, but also the emotional journeys faced by families. Dr. Grossfeld shares powerful stories from his practice, illustrating the deep connections formed between healthcare providers and patients.

Listeners will learn about the critical role of early diagnostics and how modern medicine has transformed the fatality rates associated with HLHS. The episode discusses the collaborative efforts across medical disciplines, which lead to innovative treatment and significant improvements in patient outcomes. With a keen focus on the importance of research to address genetic and environmental influences on heart conditions, Dr. Grossfeld emphasizes the need for community support in fundraising and awareness initiatives.

As the conversation shifts toward the importance of heart screenings for athletes, listeners will discover how these measures can prevent tragic outcomes and promote healthy practices among young sports enthusiasts. We encourage our audience to reflect on their understanding of pediatric heart health and to become advocates for research and support within the community. Join us in this eye-opening episode that aims not only to inform but to inspire action among listeners who share a commitment to the congenital heart disease community. Subscribe, share, and engage with us to help uplift and empower those affected by these conditions.

Here are some helpful links mentioned in this episode:

HeartWorks: https://www.webuildhearts.org
Dr. Paul Grossfeld's charities: 
Light the Way: https://radyfoundation.org/get-involved/events/light-the-way/
Miracle Makers: https://radyfoundation.org/ways-to-give/fundraise/miracle-makers/
Hearts Unite the Globe (HUG): https://www.heartsunitetheglobe.com

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Emily Falcon's journey with a rare heart condition is nothing short of inspiring. After multiple heart surgeries, she defied the odds and became a dedicated 5K athlete, showcasing resilience that many find empowering. Joined by Jenn Dimas from the Fort Worth Public Library, Emily shares how literature has been a powerful companion in navigating her chronic illness. This episode also shines a light on Heart Month, weaving in personal traditions and cherished memories, such as honoring a mother's legacy through an annual cruise.

Anna Jaworski, a mother to a single ventricle heart survivor, shares her story of advocacy through Baby Hearts Press, a publishing company she founded to offer resources for families dealing with congenital heart defects. Both Emily and Anna emphasize the transformative power of personal narratives in literature, offering hope and strength to those in similar battles. Together, they explore the challenges of accurately representing chronic illnesses in media and the significant impact of personalized doctor-patient relationships, encouraging listeners to become vocal champions for their health needs.

Our community extends beyond the airwaves with the launch of an innovative Discord channel, inviting listeners to engage directly with podcast guests like Hope, Rita Scoggins, and Megan Tones. This episode also teases an upcoming interview with Dr. Paul Grossfeld, who will discuss groundbreaking genetic discoveries related to heart conditions. With a focus on building supportive networks and fostering understanding through stories, we invite you to join us as we navigate personal advocacy and collective empowerment in the heart health community.

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After facing the heart-wrenching loss of a beloved family matriarch to a once-benign heart condition, I am reminded of the fragile nature of life and the critical importance of heart health. Join me as we explore these deeply personal connections to heart disease and the heartfelt stories of families who navigate these challenges with resilience and love. This episode kicks off with a touching account of a family who urged me to share their loss hoping it might help another family living with a chronic, untreated heart condition to maintain consistent monitoring, and the efforts of "And Mama Too: a Dash of Love," a non-profit dedicated to supporting postpartum heart and NICU moms.

During this episode, you'll meet the inspiring Kate Doherty-Schmeck, Executive Director of Global ARCH, who shares her dedication to transforming outcomes for childhood-onset heart diseases. Kate's insights into the power of global collaboration underscore the immense impact of organizations advocating for improved healthcare access. From the emotional encounter in a Guatemalan hospital to powerful events in Barcelona and Washington, D.C., discover how communities are coming together to fight disparities and ensure that every child receives the care they deserve.

As the episode unfolds, I offer encouragement and resources for those touched by congenital heart disease. Whether it's through volunteering with Global ARCH or becoming an empowered advocate, there are myriad ways to contribute to this vital cause. More than just stories, these narratives serve as a clarion call for action, reminding us all of the strength found in community and the enduring spirit of advocacy. Remember to tune in every Tuesday for new episodes filled with heartwarming stories and invaluable insights.

Global ARCH link: https://global-arch.org/
&Mamatoo: A Dash of Love: https://www.andmamatoo.com/home

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Can an unexpected adventure in Kraków teach you about resilience and support? Join me, Anna Jaworski, as I recount a thrilling axe-throwing escapade with my husband, Frank, which became an unexpected metaphor for our family's journey with our courageous daughter, Hope, who battles a congenital heart defect. In this episode of Heart to Heart with Anna, we spotlight the power of belief and community support, drawing parallels between personal adventures and the challenges of raising a child with CHD. Dive into the exciting plans for Heart Month, where Mended Little Hearts takes center stage with the "Rock your Scar" photo contest and the "Share your HeArt" art competition, igniting awareness and solidarity within the CHD community.

Our journey doesn't stop there. Reflecting on the Top Ten Episodes of 2024, discover the inspiring stories of resilience and advocacy from amazing individuals. Hear about Hope's passion for writing and the unwavering strength of heart moms like Rita Scoggins. Be inspired by advocates such as Deanna Altomara and Meagan Houpt, who continue to break barriers. Celebrate fitness and perseverance with Ben Johnson's triumph over tetralogy of Fallot, and witness Marina Lohri's transformation from survivor to heart community supporter. This episode serves as both a heartfelt reflection and an exciting preview of what's to come on Heart to Heart with Anna in 2025.

Top Ten Episodes:
#10 https://tinyurl.com/H2HAnna446
#9 https://tinyurl.com/H2HandChapter1
#8 https://tinyurl.com/H2HwAnna431
#7 https://tinyurl.com/H2HwAnna442
#6 https://tinyurl.com/H2HMeaganHouptCh3and4
#5 https://tinyurl.com/H2HwAnna444
#4 https://tinyurl.com/H2HwAnnaE434
#3 https://tinyurl.com/H2HwAnna466
#2 https://tinyurl.com/H2HwAnna443
#1 https://tinyurl.com/MarinaLohri

Link to Mended Little Hearts Heart Month Activities: https://tinyurl.com/MLHFeb2024

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After an unexpected illness during a trip to Poland, I found myself in a reflective state, pondering the journey of "Heart to Heart with Anna" and what lies ahead. This episode is a heartfelt celebration of our 11-year milestone, filled with gratitude for the community that has grown alongside us. I introduce you to some key figures who've enriched our podcast, including producer Rita Scoggins, who shares her family's connection to the congenital heart defect (CHD) community, and Michael Liben, who reflects on his daughter's legacy through a grief-focused podcast. My husband, Frank Jaworski, Ayrton Beatty from Scotland, and Megan Tones from Australia also join us, highlighting the personal stories that have become the backbone of our show. 

Looking towards 2025, there's an exciting shift on the horizon as we explore genetics and heart conditions in new ways. The community's input is invaluable as we consider themes like children's perspectives on parental scars and embark on bilingual episodes for CHD families in South Africa. We also chat about potential guest experts, including cardiologists who specialize in electrophysiology and transplants, and an intriguing idea about Lyme disease's impact on heart health. These diverse topics promise to enrich our conversations and expand our understanding of the heart's mysteries.

Experimentation and innovation are at the heart of our future plans. I'm contemplating format changes, such as integrating personal stories and community news segments to keep our listeners engaged. The idea of varying the podcast's frequency presents its own challenges and opportunities, and I share reflections on the experience of running a daily podcast. With the potential for live shows and guest hosts, we're excited to keep the spirit of collaboration alive, ensuring our podcast remains a vibrant and dynamic space for shared experiences and support. Join us in celebrating the power of community and the exciting journey ahead!

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