A teenager came through a full cardiac workup and the cardiologist saw nothing wrong. Everyone else in the room saw a kid who was depressed.

🗓️ THE CONFERENCE THEY WANT YOU AT
CNOC's 14th Annual Scientific Sessions run September 16 to 18, 2026 at the Chase Center on the Riverfront in Wilmington, Delaware, hosted by Nemours Children's Hospital. Virtual attendance is free for patients and families, and in-person is just $50. Register under the "People with CHD and Family Member" category. Drezden is presenting "Neuro What? Living Inside the Outcomes" on Friday, September 18. Have something these researchers should hear? Send it to [email protected] or @theCHDpodcast and it goes into the talk.

📺 CHAPTERS
00:00 The Part of CHD Nobody Prepped You For
01:37 Andrea: Twelve Years in the PICU, Then a Pivot
02:15 Tom: A Heart Doctor Who Ended Up Studying Brains
04:17 The Huddle That Changed Everything
06:39 What a Neurodevelopmental Coordinator Actually Does All Day
13:54 So What Is CNOC, Exactly?
21:22 Collaboration Instead of Rankings
24:48 Past Keeping Kids Alive, Now What?
26:15 The 13-Year-Old Who Should Have Been Seen at Nine Months
27:11 Fixed Heart, Unfixed Everything Else
27:45 Ten Cardiologists and a Diagnosis I Didn't Know I Had
31:44 Why Adult Patients Belong in the Room
33:28 Why Parents Don't Hear What Doctors Tell Them
38:48 Heart and Brain, Explained Without the Jargon
41:47 Parent Mental Health Is Part of the Care Plan
46:53 Delaware in September, and a Free Virtual Seat
48:15 What CHD Means to Them Now
52:11 Get Your Story Into the Room

👤 ABOUT THIS EPISODE
Dr. Tom Miller is a pediatric cardiologist and division director at MaineHealth who built the University of Utah's Heart Center Neurodevelopmental Program from the ground up. Andrea Smith, RN, BSN, spent over a decade as a pediatric ICU nurse before taking over that same program as its coordinator. Together they co-chair CNOC's Programs and Meetings Committee.

Cardiac neurodevelopment is a young field — the first scientific statement came out in 2012 — born because the math changed: for decades the job was keeping infants alive, and now those kids reach adulthood with open questions about school, focus, sleep, anxiety, and executive function. Then it gets personal: Drezden went through roughly ten cardiologists before finding adult congenital care in his twenties, never connecting the ADHD, the sleep, or the traumatic stress to his heart. If you were ever told your heart was fixed and quietly wondered why everything else felt harder than it should, this conversation gives that a name.

⭐ SESSIONS PICKED FOR PATIENTS AND FAMILIES
Picked by CNOC's patient and family advisers — no scientific background needed. Your lived experience is the qualification.

Wed, Sept 16
8:00 AM | Advocacy in Action Workshop — the best place for patients and families to show up
1:30 PM | Laying the Foundation: communication, bonding, and family mental health
3:22 PM | Rapid Debate on ADHD treatment in CHD

Thu, Sept 17
9:07 AM | Connecting Communities: community-led research in adult CHD mental health
2:15 PM | Breakouts: CN3 Think Tank, Research, and Clinical Value
4:30 PM | Free evening event at the Nemours Estate

Fri, Sept 18
8:30 AM | Federal Bridges with Senator Chris Coons, and Advocacy in Action with Scott Leezer of Every 100th Heart
10:30 AM | The Educational Span: school, homebound, and hospital schooling
3:20 PM | Neuro-Optimization in Older Cardiac Patients, featuring Drezden's talk

Kids are welcome; parents can come and go as needed.

🔗 RESOURCES
CNOC: https://cardiacneuro.org
Registration: https://www2.cardiacneuro.org/forms/registration/2026ann_register.iphtml
Adult Congenital Heart Association: https://www.achaheart.org

❤️ CONNECT
Website: https://onepercentheart.com
Instagram: @theCHDpodcast
Email: [email protected]

Nothing in this episode constitutes medical advice. These are personal experiences and stories.

What happens after you survive something? Rick Puder's answer was to walk the next person through it. Brook Dorris's answer was to change the system. Both do it through the Adult Congenital Heart Association — and both programs are recruiting right now.📺 CHAPTERS00:00 Cold Open: "She'd put her hand on my chest"00:23 Introduction00:59 Brook's Story: 15 Surgeries, Small Town Kentucky01:53 Rick's Story: Heart Failure at 10 Days Old03:55 Two Paths After Survival04:30 Heart to Heart Peer Support Program06:09 Brook's Road to Advocacy07:36 Standing in Front of Congress09:50 Putting a Face to the Condition12:04 What Is the PFAB?14:23 Who the Peer Mentors Serve16:08 Why Peer Support Improves Outcomes18:14 The Power of Meeting Someone Like You20:10 Community Beyond CHD23:28 Insurance, Teaching, and the "What's Next"26:26 Medical Trauma and CPTSD28:55 White Coat Syndrome30:10 Who Should Be a Peer Mentor?33:50 The Give-a-Shit Factor35:47 Who Should Join the PFAB?36:56 Why You Should Get a Mentor Before You Need One37:53 "You Get a Mentor for a New Job — Why Not for Open Heart Surgery?"39:52 What the Peer Mentor Program Means to Rick40:46 What the PFAB Means to Brook43:07 Closing: You Don't Have to Sit in This Question Alone👤 ABOUT THIS EPISODERick Puder has been a peer mentor with ACHA's Heart to Heart program for 15 of its 16 years. He had heart failure at 10 days old, first surgery at four, and didn't meet another CHD patient until his 40s. Now he mentors other mentors as a Senior Ambassador — and some of his best mentors started as mentees.Brook Dorris has had 15 heart procedures including the Fontan and bi-directional Glenn. She's a high school special education teacher in Kentucky and a member of ACHA's Patient & Family Advisory Board. She went from being terrified of public speaking to advocating on Capitol Hill.Both programs open applications Thursday April 2nd through May 8, 2029.🔗 RESOURCES & LINKS- ACHA Heart to Heart Peer Support Program: https://www.achaheart.org/your-heart/programs/heart-to-heart/- ACHA Patient & Family Advisory Board: https://www.achaheart.org/get-involved/- Rick's first episode (and more about peer mentors) — "Not Alone Anymore": https://youtu.be/PNQPw81ZrbE❤️ CONNECT WITH USWebsite: https://onepercentheart.comInstagram: @theCHDpodcastEmail: [email protected]⚠️ DISCLAIMERNothing in this episode constitutes medical advice. These are personal experiences and stories. Listener discretion is advised.🏷️ KEYWORDScongenital heart defect, peer mentor, ACHA, peer support, patient advocacy, PFAB, Heart to Heart, adult CHD, Fontan, coarctation of the aorta, medical trauma, CPTSD, white coat syndrome, CHD community#CHD #CongenitalHeartDefect #HeartWarrior #CHDAwareness #HeartHealth #PeerSupport #ACHA #PatientAdvocacy

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 science as a side project on top of full clinical caseloads — and a stat that changed everything for her: only 29% of high-risk kids return for the developmental follow-up they need. At her own institution, it was 10%.

We also get into my own experience — I had 11 cardiologists in my first 18 years because of insurance changes, and my family didn't even know CHD was a community until I was 20. My dad read every insurance document cover to cover and still didn't know what questions to ask. That's the gap Dawn is trying to close.

She explains what she's building with Parenting Kids with CHD — an online resource that arms parents with language, patterns, and practical guidance so they can advocate for their children in schools, in clinics, and at home.

Learn more about Dr. Ilardi's work:

Parenting Kids with CHD: parentingchd.podia.com

Pediatric Neurodevelopmental Center: pedneurocenter.com/dawn-ilardi/

Contacts: The One Percent Heart — onepercentheart.com • Instagram @theCHDpodcast • Email: [email protected]

Disclaimer & 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 defect, CHD research, JAHA consensus statement, science communication, neurodevelopmental follow-up, patient advocacy, Parenting Kids with CHD, adult congenital heart disease, CHD awareness, CNOC

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 a heart procedure, and why the resources you access as a parent can be just as powerful a predictor of your child's outcomes as the medical complexity itself.

We also get personal. I share what it was like watching my own parents navigate three heart procedures and why my dad still can't talk about it without shutting down. Dawn responds with something that stopped me: taking care of yourself as a parent IS taking care of your child.

She closes with what she'd tell every parent before their child's procedure: stay grounded, know your role, and maintain hope.

Learn more about Dr. Ilardi's work:

Parenting Kids with CHD: parentingchd.podia.com

Pediatric Neurodevelopmental Center: pedneurocenter.com/dawn-ilardi/

Contacts: The One Percent Heart — onepercentheart.com • Instagram @theCHDpodcast • Email: [email protected]

Disclaimer & 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 defect, pediatric neuropsychology, heart-brain connection, CHD parenting, neurodevelopmental outcomes, parent mental health, child development, CHD awareness, cardiac neurodevelopment

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: [email protected]

Disclaimer & 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: [email protected]

Disclaimer & 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

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: ⁠[email protected]⁠. Jillian Tait — Instagram: @jilliantait (DMs open for CHD‑and‑pregnancy questions).

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.