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 cardiolo