Welcome to The One Percent Heart Podcast, inspired by the 1% of people born with a congenital heart defect (CHD) and the journey they navigate at every stage of life. Through heartfelt stories and expert interviews, we highlight the experiences of children and adults living with CHD, while exploring the medical breakthroughs shaping their future. Why does this matter? CHDs are often overlooked, yet they affect millions. We’re here to change that — raising awareness, offering support, and building a more connected community for patients, families, and healthcare providers.
The 1% Heart
Claim This Podcastby One Percent Heart
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22 episodes
Updated Bi-weekly
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Podcast Overview
Welcome to The One Percent Heart Podcast, inspired by the 1% of people born with a congenital heart defect (CHD) and the journey they navigate at every stage of life. Through heartfelt stories and expert interviews, we highlight the experiences of children and adults living with CHD, while exploring the medical breakthroughs shaping their future. Why does this matter? CHDs are often overlooked, yet they affect millions. We’re here to change that — raising awareness, offering support, and building a more connected community for patients, families, and healthcare providers.
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Publishing Since
10/1/2024
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Recent Episodes
July 28, 2026
Patients in the Room | cardiacneuro.org | The One Percent Heart Podcast
<p>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.</p><p>🗓️ THE CONFERENCE THEY WANT YOU AT<br>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 <a href="mailto:support@onepercentheart.com">support@onepercentheart.com</a> or @theCHDpodcast and it goes into the talk.</p><p>📺 CHAPTERS<br>00:00 The Part of CHD Nobody Prepped You For<br>01:37 Andrea: Twelve Years in the PICU, Then a Pivot<br>02:15 Tom: A Heart Doctor Who Ended Up Studying Brains<br>04:17 The Huddle That Changed Everything<br>06:39 What a Neurodevelopmental Coordinator Actually Does All Day<br>13:54 So What Is CNOC, Exactly?<br>21:22 Collaboration Instead of Rankings<br>24:48 Past Keeping Kids Alive, Now What?<br>26:15 The 13-Year-Old Who Should Have Been Seen at Nine Months<br>27:11 Fixed Heart, Unfixed Everything Else<br>27:45 Ten Cardiologists and a Diagnosis I Didn't Know I Had<br>31:44 Why Adult Patients Belong in the Room<br>33:28 Why Parents Don't Hear What Doctors Tell Them<br>38:48 Heart and Brain, Explained Without the Jargon<br>41:47 Parent Mental Health Is Part of the Care Plan<br>46:53 Delaware in September, and a Free Virtual Seat<br>48:15 What CHD Means to Them Now<br>52:11 Get Your Story Into the Room</p><p>👤 ABOUT THIS EPISODE<br>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.</p><p>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.</p><p>⭐ SESSIONS PICKED FOR PATIENTS AND FAMILIES<br>Picked by CNOC's patient and family advisers — no scientific background needed. Your lived experience is the qualification.</p><p>Wed, Sept 16<br>8:00 AM | Advocacy in Action Workshop — the best place for patients and families to show up<br>1:30 PM | Laying the Foundation: communication, bonding, and family mental health<br>3:22 PM | Rapid Debate on ADHD treatment in CHD</p><p>Thu, Sept 17<br>9:07 AM | Connecting Communities: community-led research in adult CHD mental health<br>2:15 PM | Breakouts: CN3 Think Tank, Research, and Clinical Value<br>4:30 PM | Free evening event at the Nemours Estate</p><p>Fri, Sept 18<br>8:30 AM | Federal Bridges with Senator Chris Coons, and Advocacy in Action with Scott Leezer of Every 100th Heart<br>10:30 AM | The Educational Span: school, homebound, and hospital schooling<br>3:20 PM | Neuro-Optimization in Older Cardiac Patients, featuring Drezden's talk</p><p>Kids are welcome; parents can come and go as needed.</p><p>🔗 RESOURCES<br>CNOC: <a href="https://cardiacneuro.org">https://cardiacneuro.org</a><br>Registration: <a href="https://www2.cardiacneuro.org/forms/registration/2026ann_register.iphtml">https://www2.cardiacneuro.org/forms/registration/2026ann_register.iphtml</a><br>Adult Congenital Heart Association: <a href="https://www.achaheart.org">https://www.achaheart.org</a></p><p>❤️ CONNECT<br>Website: <a href="https://onepercentheart.com">https://onepercentheart.com</a><br>Instagram: @theCHDpodcast<br>Email: <a href="mailto:support@onepercentheart.com">support@onepercentheart.com</a></p><p>Nothing in this episode constitutes medical advice. These are personal experiences and stories.</p>
April 2, 2026
More Than Survival | Rick Puder & Brook Dorris, Mentors & Advocates | The One Percent Heart Podcast
<p>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: support@onepercentheart.com⚠️ 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</p>
March 10, 2026
Why Research Never Reaches Families | Dr. Dawn Ilardi
<p>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?</p><p><br></p><p>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%.</p><p><br></p><p>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.</p><p><br></p><p>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.</p><p><br></p><p>Learn more about Dr. Ilardi's work:</p><p>Parenting Kids with CHD: parentingchd.podia.com</p><p>Pediatric Neurodevelopmental Center: pedneurocenter.com/dawn-ilardi/</p><p><br></p><p>Contacts: The One Percent Heart — onepercentheart.com • Instagram @theCHDpodcast • Email: support@onepercentheart.com</p><p><br></p><p>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.</p><p><br></p><p>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</p>
22 total episodes available
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