Tiny Little Hearts Podcast
This podcast is about Congenital Heart Disease (CHD), complex medical journeys, parenting through uncertainty and the deep resilience of walking through big life changes.
Hosted by Katelyn McMahan, a mom to three girls whose life was changed in an instant when she found out her youngest daughter had complex cardiac abnormalities. She went searching to hear about kids with a similar diagnosis and wanted to see the life they were living. She didn’t want the curated, polished stories so she could prepare her heart for the good, bad and ugly.
This podcast does just that and highlights conversations from individuals, parents, medical providers, and others navigating the very real and overwhelming world of congenital heart defects and other medical complexities. You’ll hear honest conversations, practical advice and space to feel seen and understood.
Tiny Little Hearts Podcast
12. From Patients, For Patients: How EmpowerMyCH is Transforming the CHD Journey
This episode could truly be a game changer for our CHD community. As parents and patients, we spend so much time navigating the challenges of congenital heart disease in the present — managing appointments, procedures, and uncertainty. But many of us also think about the future. How can we help our children grow into adults who confidently manage their own care? How can adult patients find the resources they need to stay informed and supported through every stage of their journey?
Today, we’re highlighting a project that’s answering those questions in groundbreaking ways: EmpowerMyCH, a web and mobile platform created by the CHD community, for the CHD community.
Joining me for this conversation are three remarkable individuals from the EmpowerMyCH team (full bios at the bottom):
- Dr. Anushree (Anu) Agarwal, a cardiologist specializing in adult congenital heart disease and cardio-obstetrics at UCSF Health, and principal investigator of the EmpowerMyCH study.
- Lindsay Alano, the Patient Engagement Lead for EmpowerMyCH and a lifelong CHD advocate living with complex heart defects.
- Joe Valente, a board-certified patient advocate, researcher, and lifelong CHD patient whose personal experience drives his passion for empowering others.
Together, we explore how EmpowerMyCH came to life, what inspired its creation, and how it’s designed to help CHD patients and families navigate the healthcare system with confidence. Dr. Agarwal shares her vision for improving care through technology and community collaboration. Joe dives into the digital medical passport, a feature designed to help patients manage records, connect with their providers, and take ownership of their medical history. Lindsay offers an honest look at the challenges of transitioning from pediatric to adult CHD care — and how EmpowerMyCH is working to make that process smoother and more supported.
Joe also shares a deeply personal story from his own childhood that illustrates the power of helping children understand their heart condition early on — a small but meaningful step toward lifelong empowerment.
As we close, Lindsay describes some of the outreach efforts already in place to expand EmpowerMyCH’s reach and connect more CHD patients and families with this vital resource. This project is just getting started, but its impact is already clear: it’s building stronger bridges between patients, families, and care teams — and helping every CHD voice be heard.
Links:
Visit https://www.empowermych.org/ to learn more.
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This episode was brought to you by the Pivot Ball Change Network.