Ten experts from eight institutions spent over a year building a consensus statement on adult congenital heart disease. It was published in the Journal of the American Heart Association — free, open access. It's an important step forward. But how do we make sure it actually reaches the families and patients it was written for? In Part 2 with Dr. Dawn Ilardi, we talk about what happens after research gets published. Dawn walks through the real barriers — dense jargon, paywalls, researchers doing ...
Mar 10, 2026•35 min
If your child was born with a heart condition, there's a connection between their heart and their brain that most families are never told about. Dr. Dawn Ilardi is a pediatric neuropsychologist who has spent nearly two decades studying the relationship between congenital heart disease and brain development. In this episode, she breaks it down in plain terms — what a cardiologist sees vs. what a neuropsychologist sees when they look at the same kid, the two misconceptions parents fall into after ...
Mar 10, 2026•33 min
How do you build a nonprofit while working 60-hour weeks and raising a baby with HLHS? In Part 2, Connor Hill breaks down exactly what Stronger Hearts Foundation has accomplished in just a few months — from hitting their $20,000 goal by October to delivering 30 care packages CHOP, with expansion to Johns Hopkins already underway. We get into the real numbers, the real hours, and why a clinical coordinator at Hopkins straight up called him crazy. We also talk about the teamwork it takes — both at...
Dec 26, 2025•36 min
What happens when your child's heart diagnosis becomes the catalyst for helping hundreds of other families? Connor Hill, co-founder of the Stronger Hearts Foundation, joins the show to share his family's journey with CHD — from the terrifying early days with their son Dawson to creating an organization that provides care packages, housing support, and resources for families navigating the same path. In Part 1, we talk about Dawson's incredible progress, the gut-check moments that inspired the fo...
Dec 19, 2025•25 min
The ripple effects of one 1952 surgery are still being felt today. In this final part, we explore the awareness gap that leaves thousands of CHD patients without proper care, the difference between congenital and acquired heart disease that even doctors confuse, and why Bill has spent years making sure other patients don't fall through the cracks. Bill reflects on what CHD means to him after 73 years, Dr. Taussig's work that made his life possible, and his mother's wisdom that shaped everything:...
Dec 12, 2025•35 min
What happens after you survive a surgery that wasn't supposed to work? Bill Causey didn't just survive - he thrived. Law school, 34 years teaching at Georgetown, marriage, family, and a career that impacted thousands. In Part 2, Bill shares what it was like navigating decades of cardiac care, the deeply personal letter from Dr. Taussig that said "hearing from you warmed my heart," and why he's devoted years to adult congenital heart advocacy. We also dive into the critical difference between ped...
Dec 05, 2025•21 min
In 1952, a three-year-old blue baby was given weeks to live. On Dr. Alfred Blalock's 54th birthday, he and his team performed a groundbreaking surgery that would change cardiac care forever. 73 years later, Bill Causey is the longest living open heart patient in the world. This is Part 1 of a three-part series where Bill shares his incredible story - from Dr. Helen Taussig's fingertip diagnosis, to Vivian Thomas's pinky finger that fixed his heart valve, to waking up in a recovery room with an E...
Nov 28, 2025•25 min
Be advised: This episode discusses medical trauma including loss of autonomy and denial of care. Listener discretion is advised. Episode 11: Women's Health & CHD A candid look at how “risk management” can morph into control, and what self‑advocacy looks like as a woman with with CHD. Jillian Tait and returning guest Aliza Marlin join to talk about the thin line between appropriate caution and medical gaslighting in CHD care, especially during pregnancy. Jillian recounts a straightforward pre...
Aug 25, 2025•54 min•Season 2Ep. 2
The app putting CHD patients in control - and the remarkable story behind it. Meet the team behind EmpowerMyCH , a groundbreaking app created specifically for CHD patients. Dr. Anu Agarwal (ACHD Specialist, UCSF), Project Lead Joe Valente, and Patient Engagement Chair Lindsay Alano share how personal experiences and patient-focused research inspired their work. Discover how EmpowerMyCH combines technology, peer support, and expert guidance to help patients confidently manage lifelong care.Learn ...
Jul 21, 2025•50 min•Season 2Ep. 1
Transforming Personal Trauma into Powerful Advocacy In this episode of the One Percent Heart, I'm joined by Brook Dorris, a patient advocate, special education teacher, and member of the Nashville Walk for 1 in 100's planning committee. Brook shares her extraordinary journey of navigating life with congenital heart defects, including double inlet left ventricle, transposition of the great vessels, and dependency on an internal pacemaker. After facing more than 15 heart surgeries - half of them o...
Mar 31, 2025•47 min•Season 1Ep. 9
How Peer Mentors Change the Game for CHD Patients and Families In this special episode of The 1% Heart , we highlight the power of peer mentorship and the incredible impact of the Adult Congenital Heart Association’s (ACHA) Peer Support Program . This program connects CHD patients, family members, and partners with trained mentors who truly understand the journey—because they've lived it. Our guest is Karla Deal , the program coordinator for ACHA’s Heart to Heart Peer Support Program —and a CHD ...
Feb 08, 2025•44 min
Heart Failure and the Transplant Process In this episode of The 1% Heart podcast, we hear from Bailey Vincent, a congenital heart patient currently undergoing evaluation for advanced therapies due to heart failure. Born with Epstein’s Anomaly and Wolf-Parkinson-White syndrome, Bailey shares her journey through the challenges of managing a complex heart condition while balancing work, health, and personal responsibilities. The conversation explores the importance of self-advocacy, the need for a ...
Feb 03, 2025•41 min•Season 1Ep. 8
Navigating the relationship between CHDs and exercise In this episode, we get to hear from a rock climber with a mechanical valve. Bob Smith, an English teacher from Colorado, takes us through his CHD journey and his experience with a mechanical aortic valve. Since his valve replacement, he's climbed Mt. Rainer, El Capitan, and a long list of other expert trails. The conversation highlights the different activity levels of patients and how some patients push the limits of what's possible - and r...
Dec 30, 2024•44 min•Season 1Ep. 7
The Peer Mentor Program and having someone who gets it In this special episode of The 1% Heart, we learn about peer support in the CHD community and the Adult Congenital Heart Association's Peer Mentor program. We get to meet two mentors: Rick Puder, who has been with the program since it started, and Jennie Fox, who was a mentee before becoming a mentor herself. Together, we discuss the importance of patients today learning from patients that have walked in their shoes. The ACHA's Heart to Hear...
Dec 17, 2024•49 min•Season 1Ep. 6
How CHD medical trauma can influence mental health In the fifth episode of The 1% Heart, I get the opportunity to learn from Meghan Stewart of Hands to Heart Therapy. Meghan is a CHD patient and registered clinical counselor, providing a unique perspective on the CHD patient experience. Together, we explore Meghan's personal journey with CHD, the importance of understanding pediatric medical trauma, and the role of family dynamics in healing. Disclaimer & Trigger Warning: Nothing in this epi...
Dec 10, 2024•38 min•Season 1Ep. 5
A crossover episode with Stewart Liang of Heart2Hearts Podcast In this special crossover episode of The 1% Heart , I am joined by Stewart Liang, the UK-based advocate and creator of the Heart2Hearts podcast. We take a deep dive into the contrasting landscapes of CHD care in the United States and the United Kingdom, exploring how healthcare systems and costs impact patient experiences on both sides of the Atlantic. Our conversation covers the origins of Heart2Hearts , created during the pandemic ...
Nov 05, 2024•31 min•Season 1Ep. 4
How raw advocacy is changing how patients are viewed by society In the third episode of The 1% Heart, I'm joined by Bethany and Hannah Keime, the founders of HeartCharged and CHD Patients. Our conversation delves into the impact of social media in connecting patients, raising awareness, and the gender disparities that exist in cardiac care. Bethany and Hannah highlight the need for better healthcare representation and discuss ways patients can empower themselves through knowledge and community c...
Oct 29, 2024•26 min•Season 1Ep. 3
How advocacy influences public policy and the charities and organizations fighting for heart patients In the second episode of The 1% Heart, I'm joined by Mark Roeder, President and CEO of the Adult Congenital Heart Association. With decades of experience in public relations and strategic planning, Mark is the perfect champion for legislation that supports CHD patients. Our conversation explores the challenges of raising awareness for Congenital Heart Defects, the importance of lifelong care, an...
Oct 22, 2024•34 min•Season 1Ep. 2
A brutally honest discussion of the Congenital Heart Defect care experience from very different perspectives. In the first episode of 1% Heart , I’m joined by Aliza Marlin , a CHD patient, influential advocate, and a ray of positivity. Together, we relive our personal experiences with CHD care through a raw, candid, heart-to-heart discussion. We explore the realities of diagnosis, treatment, and the often challenging transition from pediatric to adult care , comparing good and bad heart care. Th...
Oct 15, 2024•42 min•Season 1Ep. 1
Coming out next month! In the meantime, you can check us out at ww.onepercentheart.com and follow us on Instragram @theCHDpodcast. The 1% Heart is a podcast inspired by the 1% of people born with a congenital heart defect (CHD). Through heartfelt stories and expert interviews, we highlight the lived experiences of patients, while exploring the medical advancements and advocacy shaping the future.
Oct 01, 2024•3 min
