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.