Tiny Little Hearts Podcast: CHD and Heart Mom Life

In this episode, Kelly DiMaggio joins me to talk about her life living with HLHS. Her mom didn’t receive a prenatal diagnosis. At one point, her doctors gave her 24 hours to live. Nearly four decades later, she's living a full life — married, working in finance, and dedicating her time to moving the CHD community forward. In this conversation, Kelly walks through her early medical history, the mental health weight of be...

Katelyn shares her personal journey navigating her child's entry into preschool with a congenital heart defect, offering insights on choosing the right environment, advocacy, and supporting her child's growth.

Chapters

00:00 Introduction to navigating preschool with a CHD child
02:36 Factors influencing preschool decision-making
04:21 School's approach to medically complex children
06:34 Researching and touring poten...

35. Cole Wieland on Life with HLHS and Creating Half Heart Mission

Two podcasters. Two heart journeys. One community.

In this episode, Katelyn sits down with Cole Wieland, founder of Half Heart Mission and a 20-year-old living with hypoplastic left heart syndrome (HLHS). Cole and Katelyn have both built platforms inside the CHD community — his from the patient side, hers from the parent side — and this conversation is the...

Season 2 is here! In this solo episode, Katelyn is back after a summer break to recap the season and share what's ahead for Tiny Little Hearts: CHD and Heart Mom Life.

This summer marked the first time Katelyn and her family resumed their normal travel schedule since Goldie's diagnosis — a milestone that brought unexpected waves of reflection on the past three years. Katelyn shares what it felt like to pack for a trip with dra...

If you're a heart parent navigating congenital heart disease, you know that the journey is rarely a straight line — and neither is building a community around it. In this special solo episode, Katelyn closes out Season 1 of Tiny Little Hearts with a heartfelt thank you to the CHD parenting community that has grown around this show.

Over the past year, Tiny Little Hearts has become a space where congenital heart disease familie...

Summary: 

In this episode, Katelyn sits down with Katie Taylor — certified child life specialist, co-founder and CEO of Child Life On Call, author, speaker, and host of Inside the Children's Hospital podcast — for a deeply honest conversation about caregiver burnout.

Katie has spent over 15 years working at the bedside of children's hospitals and supporting families through some of their hardest moments, and she brin...

31. My Top 5 Takeaways From Advocating For CHD on Capitol Hill

Summary: 

In this episode, Katelyn McMahan shares her top five takeaways from attending the National CHD Advocacy Summit in Washington, D.C. — her very first advocacy trip to Capitol Hill. As a member of the Every Hundredth Heart Coalition, Katelyn joined patients, heart parents, clinicians, researchers, and advocates from across the country with one shared goa...

In this episode, Katelyn sits down with Tim Nelson, MD, PhD and CEO of HeartWorks — a nonprofit at the forefront of congenital heart disease (CHD) innovation. What unfolds is a candid, unflinching look at why the healthcare system is failing CHD patients and families, and what it's actually going to take to change it.

The conversation covers HeartWorks' groundbreaking cell-based tissue engineering — including FDA-approve...

This Mother's Day episode is dedicated to every heart mom navigating the unique weight of medical motherhood and congenital heart disease parenting. Katelyn reflects on honoring the heart moms who came before us — including her own grandmother, an unsung CHD mom from the 1950s — and opens up about grieving the motherhood experience you didn't get when your child is medically complex. She gets honest about hitting rock b...

Summary:

Today, Katelyn sits down with Staci Reznik — mom to 10-year-old Davi, advocate, and someone who knows firsthand that no amount of medical expertise can prepare you for the moment you become a patient.

Staci's story is uniquely layered: her husband is a cardiothoracic surgeon, and she spent years working on the facilities side of healthcare. Together, they had built their careers inside hospitals — and yet when Da...

This week on Tiny Little Hearts, Katelyn sits down with Alison Winter — host of the Trauma Mamas podcast — for a special host-to-host conversation. Both are navigating medically complex motherhood from different diagnoses (CHD and BPD), but their journeys share more in common than you'd expect.

Alison's son Donny was born at 28 weeks, weighing one pound twelve ounces, and spent nearly two years in the hospital before com...

What happens when the pregnancy you dreamed of looks nothing like the one you're living? In this solo episode, Katelyn gets honest about something that doesn't get talked about enough in the medical motherhood world — grieving the pregnancy and birth you didn't get, even when your baby is still here.

After receiving her daughter Goldie's congenital heart disease (CHD) diagnosis in utero at 18 weeks, Katelyn found herself griev...

In this episode, host Katelyn McMahan sits down with Liz Gaston — heart mom, CHD advocate, and co-founder of Project 1 in 100 — for a deeply honest conversation about life after a prenatal congenital heart disease diagnosis. Liz shares her journey raising her four-year-old son Ben, who was born with single ventricle heart disease, double outlet right ventricle (DORV), and has completed all three stages of the Fontan sur...

In this episode, I’m joined by Lauren and Lauren. One, a heart mom, and the other, an adult CHDer. For Lauren Watson and Lauren Bednarz, that one message 13 years ago became the foundation of one of the deepest friendships either of them has ever known.

We talk about how they found each other, what it looked like to build a real friendship virtually before it was "normal" to do so, and why CHD brought them together but doesn't...

Summary:

Every CHD parent remembers the moment the world stopped. The diagnosis. The surgery date. The waiting room. But what happens to the family holding it all together while their child is in the OR?

In this episode, Katelyn sits down with Conner Hill, co-founder of Stronger Hearts Foundation, to talk about his son Dawson's diagnosis of Hypoplastic Left Heart Syndrome (HLHS) at 20 weeks, the 100+ inpatient days that followed, and...

Summary

In this episode, Katelyn has a conversation with her 9 year old daughter, Lila, who shares about her experience being a sibling of a child with heart problems. She shares insights on family resilience, emotional processing and caring for her sister, Goldie. Lila gives insight to the emotional impact it had on her and her other sister Maeve, as well as what was helpful for them when processing and understanding what was going...

Summary

In this conversation, Katelyn discusses how to prepare for cardiology appointments, focusing on the importance of being armed with questions and emotional readiness. She emphasizes the need for preparation in three key areas: understanding changes in health, logistical arrangements for the appointment, and emotional readiness to advocate for oneself or your child. Katelyn also shares practical tips and resources to help pare...

In this episode, Katelyn McMahan discusses the often-overlooked topic of caregiver burnout, sharing her personal experiences and insights. She emphasizes the commonality of burnout among caregivers, the emotional toll it takes, and the importance of recognizing its triggers and signs. Katelyn offers practical strategies for self-care and highlights the significance of building a supportive community to navigate the challenges of ca...

In this conversation, Katelyn McMahan and her husband discuss the challenges of maintaining a strong marriage while navigating the complexities of raising medically complex children. They share personal experiences, strategies for communication, the importance of support systems, and the necessity of prioritizing both individual and marital well-being amidst caregiver burnout. The discussion emphasizes the significance of teamwork,...