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

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 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).

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• Disclaimer & Trigger Warning
  Nothing 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 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 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/e648461

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 Peer Mentors Change the Game for CHD Patients and Families

In 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 needsyou

Right 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.org

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.

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.