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&#39;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&#39;s Hospital. Virtual attendance is free for patients and families, and in-person is just $50. Register under the &quot;People with CHD and Family Member&quot; category. Drezden is presenting &quot;Neuro What? Living Inside the Outcomes&quot; 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&#39;t Know I Had<br>31:44 Why Adult Patients Belong in the Room<br>33:28 Why Parents Don&#39;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&#39;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&#39;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&#39;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&#39;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">ht