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.