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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: DawnIlardi@pedneurocenter.com

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

Sheri Turner is our newest Defender Patron and she also serves as a HUG Volunteer. Thank you so much for your generosity and all you do, Sheri!

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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

Sheri Turner is our newest Defender Patron and she also serves as a HUG Volunteer. Thank you so much for your generosity and all you do, Sheri!

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Anna's Buzzsprout Affiliate Link

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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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Baby Blue Sound Collective

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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!

Sheri Turner is our newest Defender Patron and she also serves as a HUG Volunteer. Thank you so much for your generosity and all you do, Sheri!

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Unlock the future of heart care and understand how a revolutionary cooperative platform is reshaping the landscape of congenital heart disease treatment. Join us as we explore the groundbreaking innovations at HeartWorks, a transformative program at the Mayo Clinic led by Dr. Tim Nelson. With heartfelt insights from Erin Borkowski, a dedicated heart mom, and Rachael Gott, an inspiring adult living with congenital heart disease, we delve into the challenges and advancements that are redefining patient care and clinical trial processes.

Meet the pioneers behind the scenes as Dr. Nelson explains how HeartWorks is bridging the gap between research and real-world applications. By harnessing patient-contributed data, this initiative is overcoming the frustrations of traditional clinical trials, making them more effective and timely. Rachael Gott shares her personal journey with HeartWorks, emphasizing the significant impact of ongoing research and patient empowerment in the fight against congenital heart disease.

Discover how HeartWorks is turning obstacles into opportunities through a data-driven cooperative platform. This patient-owned model is not only increasing enrollment in clinical trials, but also creating a collaborative network of institutions across the nation. From engineering heart muscle cells from skin biopsies to making clinical trials more accessible, HeartWorks is revolutionizing the way we think about congenital heart disease care. Tune in to learn how you can support these efforts and contribute to a brighter future for individuals of all ages affected by congenital heart conditions.

Rachael’s episode: Navigating Life with HLHS and Marfan Syndrome: Rachael’s Powerful Story: https://tinyurl.com/393hbmrm

Dr. Tim Nelson’s other “Heart to Heart with Anna” appearances:

Advancements in Stem Cell Therapies and Research for HLHS Heart Warriors: https://hearttoheartwithanna.buzzsprout.com/62761/episodes/494353-advancements-in-stem-cell-therapies-and-research-for-hlhs-heart-warriors

The Use of Stem Cells in Treatment for Hypoplastic Left Heart Syndrome (HLHS): 

https://hearttoheartwithanna.buzzsprout.com/62761/episodes/9949984-the-use-of-stem-cells-in-treatment-for-hypoplastic-left-heart-syndrome-hlhs

HeartWorks Update 2023: https://hearttoheartwithanna.buzzsprout.com/62761/episodes/12191542-heartworks-update-2023

HeartWorks: https://heartworksinc.org/

The Co-Op: https://heartworksinc.org/coop

Sheri Turner is our newest Defender Patron and she also serves as a HUG Volunteer. Thank you so much for your generosity and all you do, Sheri!

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Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

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Ever thought you could lead an exhilarating life despite a congenital heart defect? Meet Ben Johnson, a formidable heart warrior born with tetralogy of Fallot. Tune in as Ben, now 45, recounts his spirited childhood and how his heart condition didn't stop him from being a vibrant, active child. From hospital memories to a loving family and supportive teachers, Ben's story is a testament to resilience and the power of a strong support system. He takes us through his childhood escapades, proving that with the right mindset and community, a heart defect doesn't have to define your limits.

Our conversation with Ben reveals the intricate journey of living with congenital heart defects, focusing on the visible reminders, including his scars and tattoos, and their role in shaping his life narrative. Delve into Ben's fitness journey where he embraces an active lifestyle with weightlifting, debunking common myths about limitations for heart patients. With the guidance of a personal trainer and self-monitoring, Ben exemplifies how managing health proactively can lead to a robust and fulfilling life, inspiring others with heart conditions to pursue their ambitions confidently.

The episode doesn't just stop at physical well-being. We explore the significant link between exercise and mental health, sharing personal triumphs over post-surgical discomfort and the incredible benefits of targeted workouts. From stretching and strengthening exercises to the profound impact of endorphins, discover how maintaining an active routine can elevate mood and reduce anxiety. Encouraging inclusivity in physical activities, we stress that everyone, irrespective of physical limitations, can find joy and freedom in movement. Join us in fostering a community of heart warriors, advocating for empowerment, and cherishing each milestone along our shared journeys.

Ben Johnson's contact information: https://tinyurl.com/y9yw53nj

Ben's stretching episode for lats: https://youtu.be/tlkjkpt9tE8

Ben's YTWL exercise:
https://www.youtube.com/watch?v=5pGqzU0y6yk

Sheri Turner is our newest Defender Patron and she also serves as a HUG Volunteer. Thank you so much for your generosity and all you do, Sheri!

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Do Halloween festivities bring more joy or concern when you’re living with a congenital heart defect? Ashley DeMarco shares her journey growing up with complex heart conditions, turning personal challenges into stories of resilience. Alongside her, we hear from Michael Liben, who navigates grief with humor on his podcast "Bereaved but Still Me," and Rita, who provides a multi-generational perspective on congenital heart disease (CHD) with her family's experiences. Together, we unravel the nuances of navigating health and community as young adults and parents in the CHD world, painting a picture of hope and solidarity.

As we transition into the spirit of Halloween, nostalgia and safety tips blend together in our lively discussions. We reminisce about trick-or-treating in tight-knit communities, while also highlighting the essential precautions for children with heart conditions during these festivities. The contrast between past and present perceptions of safety reveals a world that’s both cautious and filled with connection through shared medical experiences. Our conversation is a heartwarming reminder of the bonds formed between parents and children, especially when magic and medicine intersect.

Finally, we address the often-overlooked emotional toll of compassion fatigue. With stories from heart camps and non-CHD friendships, we explore the challenges of maintaining relationships while living with ongoing health issues. Rita reflects on a memorable live show, demonstrating how our means of connecting have evolved. The conversation serves as a beacon for understanding and connection, underscoring the profound need for community support. We invite listeners to contribute their insights and stories, enriching the dialogue and reinforcing the shared journey of the CHD community.

Helpful Links:

The Rita, Victoria and Heidi Scoggins' episode: https://tinyurl.com/3Scoggins

Amy Erhart's first Heart to Heart with Anna episode: https://www.buzzsprout.com/62761/episodes/15810923

One of Michael Liben's Heart to Heart with Anna episodes: https://www.buzzsprout.com/62761/episodes/736588

Compassion Fatigue Episode: https://www.buzzsprout.com/62761/episodes/736588

Sheri Turner is our newest Defender Patron and she also serves as a HUG Volunteer. Thank you so much for your generosity and all you do, Sheri!

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Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

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Meet Marina Lohri, a true trailblazer in the world of congenital heart defects (CHDs). Born with tricuspid atresia, a ventricular septal defect, and an atrial septal defect, Marina’s journey from a life-saving C-section to being among the first in Switzerland to undergo a modified-Fontan procedure at just 11 months old is nothing short of miraculous. In our conversation, Marina unfolds her inspiring story and shares her passion for working at atHeart Medical, where she is dedicated to promoting innovative solutions for those with similar heart conditions.

Navigating the complexities of living with Atrial Fibrillation (AFib) and congenital heart defects is no small feat. Marina opens up about her personal experiences with rapid heart rates and the profound decision to undergo an ablation. As she contemplates the intricate considerations surrounding pregnancy with a congenital heart condition, we delve into the evolving medical advice she received and the diverse perspectives of healthcare professionals. Marina’s story is a testament to the importance of specialized care and the expertise found at top hospitals in Switzerland.

From finance to the medical field, Marina's career journey is a testament to aligning work with personal values and health needs. As she shares her transition to atHeart Medical, a startup focused on congenital heart defects, Marina highlights the rewards of working in a supportive environment that truly understands the challenges of living with CHD. Her advocacy extends beyond her professional life, as she continues to inspire others with similar heart conditions to pursue their passions and find purpose in their careers. Marina’s resilience shines through as she navigates life's challenges with a positive attitude and a commitment to the CHD community.

Helpful Links:

atHeart Medical website: https://atheartmedical.com

Support Organizations:

Mended Hearts: https://mendedhearts.org

(In German)
Herznetz: https://www.herznetz.ch/
Fontanherzen: https://fontanherzen.ch/
Swiss Heart: https://swissheart.ch/

Sheri Turner is our newest Defender Patron and she also serves as a HUG Volunteer. Thank you so much for your generosity and all you do, Sheri!

Support the show

Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

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