The One Percent Heart

Be advised: This episode discusses medical trauma including loss of autonomy and denial of care. Listener discretion is advised. Episode 11: Women's Health & CHDA 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 pregnancy that turned into a medical‑care nightmare and the effects that followed; Aliza contrasts with decades of collaborative ACHD care. Together they outline practical advocacy moves you can use tomorrow: ask for time, request the evidence, walk out of bad appointments, and get second opinions. This one is about consent, autonomy, and refusing to be managed instead of heard.Contacts: The 1% Heart — onepercentheart.com • Instagram @theCHDpodcast Email: ⁠support@onepercentheart.com⁠. Jillian Tait — Instagram: @jilliantait (DMs open for CHD‑and‑pregnancy questions).Disclaimer & Trigger WarningNothing in this episode is medical advice. These are personal experiences and opinions. Contains discussion of medical trauma, sterilization, adult language, and mental health. Listener discretion advised. Keywords:women’s heart health, CHD pregnancy, informed consent, medical gaslighting, IVF after CHD, ACHD advocacy, UK vs US care, bodily autonomy.

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 more at empowermych.org or on Instagram @empower.my.ch.Disclaimer & Trigger Warning:Nothing in this episode constitutes medical advice. This podcast contains honest discussions of medical trauma, adult language, and adult content. Listener discretion is advised.Clarification: During the introductions, Dr. Agarwal was introduced as the Director of the Adult Congenital Heart Disease (ACHD) Program at the University of California San Francisco (UCSF). We would like to clarify that Dr. Agarwal is the Director of the Adult Congenital Heart Disease (ACHD) Research Program at the University of California San Francisco (UCSF).  

Transforming Personal Trauma into Powerful AdvocacyIn 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 open-heart - Brook speaks openly about her struggles, triumphs, and the unexpected ways her experiences shaped her advocacy journey.Together, we dive into the emotional complexities of managing friendships, college life, and personal relationships while dealing with chronic illness. Brook emphasizes the importance of community support, the transformative role of heart camps, and the critical need for effective patient transition programs into adult congenital heart care. Through candid anecdotes and thoughtful reflections, Brook demonstrates how embracing one's story, even when it feels like "trauma dumping," can lead to healing and powerful advocacy.Don't miss Brook's inspiring speech at the Nashville Walk for 1 in 100 on April 5th. Details in the link below!https://support.achaheart.org/event/2025-nashville-walk-for-1-in-100/e648461Disclaimer & Trigger Warning: Nothing in this episode constitutes medical advice. These are our personal experiences, opinions, and stories. This podcast contains honest discussions of medical trauma, adult language, and adult content. Listener discretion is advised.

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 supportive healthcare team, and the delicate balance of managing work, health, and family responsibilities. Bailey offers an honest perspective on the emotional and logistical hurdles of waiting for a potential heart transplant while also emphasizing the resilience, strength, and support found within the CHD community. Her story serves as a potent reminder that while CHD presents lifelong challenges, it also fosters a deep sense of community and perseverance. Disclaimer & Trigger Warning: Nothing in this episode constitutes medical advice. These are our personal experiences, opinions, and stories. This podcast contains honest discussions of medical trauma, adult language, and adult content. Listener discretion is advised.

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 redefine what it means to have a CHD. You can learn more at: www.myaorticadventure.blogspot.com Disclaimer & Trigger Warning: Nothing in this episode constitutes medical advice. Always listen to your Doctor's advice when it comes to exercise limitations. These are our personal experiences, opinions, and stories. This podcast contains honest discussions of medical trauma, adult language, and adult content.   Listener discretion is advised.

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 Heart peer mentor program is not only for patients, its for family members and significant others as well. You can sign up using the link below. And if you don't need a mentor, then be a mentor. https://www.achaheart.org/your-heart/programs/heart-to-heart/ Disclaimer & Trigger Warning: Nothing in this episode constitutes medical advice. These are our personal experiences, opinions, and stories. This podcast contains honest discussions of medical trauma, adult language, and adult content.

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 episode constitutes medical advice. These are our personal experiences, opinions, and stories. This podcast contains honest discussions of medical trauma, adult language, and adult content.

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 as a space for sharing patient stories with a relaxed, approachable style. Stewart shares how streamlined continuity of care in the UK contributes to positive patient experiences, while we discuss the challenges in the US, where high healthcare costs and frequent provider changes often complicate the transition from pediatric to adult care. We also emphasize the power of community and advocacy, examining how both Heart2Hearts and The 1% Heart aim to foster a supportive network for CHD patients and families. This episode underscores the shared struggles and hopes within the CHD community, as well as the importance of fundraising and advocacy to improve care quality worldwide. Stewart’s belief in the impact of storytelling offers a hopeful reminder: sharing experiences can provide patients with connection, comfort, and encouragement, no matter where they are. Disclaimer & Warning: Nothing in this episode constitutes medical advice. These are our personal experiences, opinions, and stories. This podcast contains honest discussions of medical trauma, adult language, and adult content. Listener discretion is always advised.

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 connections. The episode concludes with personal reflections on the resilience of CHD patients and how accessible information and advocacy can save lives. Disclaimer & Trigger Warning: Nothing in this episode constitutes medical advice. These are our personal experiences, opinions, and stories. This podcast contains honest discussions of medical trauma, adult language, and adult content. Listener discretion is advised.

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, and the recent passage of the Congenital Heart Futures Reauthorization Act (CHFRA). Mark shares insights on the role of ACHA in supporting adults with CHD, the significance of transitioning from pediatric to adult care, and how patients and families can get involved in advocacy efforts. The conversation highlights the need for continued support and awareness for this growing population.   Disclaimer & Trigger Warning: Nothing in this episode constitutes medical advice. These are our personal experiences, opinions, and stories. This podcast contains honest discussions of medical trauma, adult language, and adult content.   Listener discretion is advised.

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. This conversation highlights the power of community support, the importance of self-advocacy, and the critical role of communication in healthcare. Aliza's optimistic approach, alongside my reflections, underscores the resilience of CHD patients and the importance of finding the right care. Disclaimer & Trigger Warning: Nothing in this episode constitutes medical advice. These are our personal experiences, opinions, and stories. This podcast contains honest discussions of medical trauma, adult language, and adult content. Listener discretion is advised.

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 home with his wife Kali and within the foundation — and why having patients and parents as advocates alongside medical professionals makes such a difference.Connor closes with one of the most powerful answers I've heard to "What does CHD mean to you?" — and it's worth sticking around for.Learn more about Stronger Hearts Foundation: http://strongerheartsfoundation.com/Contacts: The 1% Heart — onepercentheart.com • Instagram @theCHDpodcast • Email: support@onepercentheart.comDisclaimer & Trigger Warning: Nothing in this episode constitutes medical advice. These are personal experiences, opinions, and stories. This podcast contains honest discussions of medical trauma. Listener discretion is advised.Keywords: congenital heart defects, Stronger Hearts Foundation, HLHS, CHD nonprofit, CHOP, Johns Hopkins, parent advocacy, CHD awareness

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 foundation, and the real challenges families face during extended hospital stays. Connor gets honest about navigating medical emergencies and the toll it takes on everyone involved.Stay tuned for Part 2 — where we dig into relationships, communication, and how couples can either break or grow stronger through the CHD journey.Learn more about Stronger Hearts Foundation: http://strongerheartsfoundation.com/Contacts: The 1% Heart — onepercentheart.com • Instagram @theCHDpodcast • Email: support@onepercentheart.comDisclaimer & Trigger Warning: Nothing in this episode constitutes medical advice. These are personal experiences, opinions, and stories. This podcast contains honest discussions of medical trauma. Listener discretion is advised.Keywords: congenital heart defects, Stronger Hearts Foundation, NICU, parenting, CHD family support, heart surgery, CHD awareness

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: "You're different, but you're not special." This episode is about the legacy of Blalock, Taussig, and Thomas - not just in medical journals, but in every patient who gets to grow up because of what they pioneered. Keywords: CHD awareness, congenital heart legacy, patient advocacy, adult congenital heart care, Blalock-Taussig-Thomas, living with heart defects, cardiac patient stories

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 pediatric and adult congenital care - and why 80% of cardiologists aren't trained to treat adult CHD patients. This episode tackles access to care, the mental weight of living with something you can't cure, and what doctors told Bill for 73 years straight: "You're going to need a valve replacement." Spoiler: He still hasn't. Keywords: adult congenital heart disease, ACHA, pediatric to adult transition, CHD advocacy, cardiac care access, living with CHD, valve replacement, congenital heart awareness

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 Easter bunny. This is the story of the surgery that started it all. Featuring: William "Bill" Causey, open heart surgery survivor since 1952 Host: Drezden Plotkin Keywords: congenital heart defect, blue baby syndrome, Blalock-Taussig-Thomas, Johns Hopkins, pulmonary stenosis, cardiac surgery history, CHD awareness

How Peer Mentors Change the Game for CHD Patients and FamiliesIn this special episode ofThe 1% Heart, we highlight the power of peer mentorship and the incredible impact of theAdult 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 isKarla Deal, the program coordinator for ACHA’sHeart to Heart Peer Support Program—and a CHD patient herself. Karla shares her personal journey withCHD, how mentorship changed her perspective, and whypeer support is so crucial for navigating lifelong CHD care.Together, we explore:🔹 How thepeer mentor program works and who it’s for🔹 Thethree pillars of mentorship: Education, Self-Advocacy, and Empowerment🔹 The impact of finding someone who truly "gets it"🔹 What makes a great mentor and why the program needsyouRight now, ACHA isrecruiting new peer mentors—patients and family members alike! If you’ve ever wanted togive back to the CHD community, this is your chance.Applications close on February 18th, and you can find the link in the show notes or on ACHA’s website.💡If you don’t need a mentor, go be a mentor.Links & Resources:📌Apply to be a mentor or request one:ACHA Peer Support Program📌Contact Karla Deal:kdeal@achaheart.orgDisclaimer & Trigger Warning: Nothing in this episode constitutes medical advice. These are our personal experiences, opinions, and stories. This podcast contains honest discussions of medical trauma, adult language, and adult content.Listener discretion is advised.

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.