Tiny Little Hearts Podcast: CHD and Heart Mom Life

Handing your child over before a procedure is one of the hardest moments a parent faces. Doc JC knows that moment from the other side.

She is a pediatric anesthesiologist, a lifelong advocate for children, and the author of Adventures with Doc JC: The Unseen Planet, a children's book published in both English and Spanish that prepares kids for anesthesia. In her story, your child is not the patient. Your child is the superhero.

Doc JC shares the two moments that shaped her work: hosting a five-year-old named Rosa during chemotherapy in Guatemala, and watching a hospital clown change everything for a frightened child. She explains why kids already know when we're nervous, why saying nothing is worse, and how to turn anxiety into excitement the night before.

This one is for the whole home team.

In this episode

• Why Doc JC began pairing medicine with storytelling
• The "home team," and how children read the emotions of the adults around them
• The amusement park question she asks parents the night before surgery
• Anxiety and excitement as the same feeling, pointed in different directions
• Why she chose a galaxy: every child, everywhere, can look up and see it
• What anesthesiologists do, and the art in the specialty
• Katelyn's own experience awake during Goldie's in-utero heart procedure at 23 weeks
• Reading with siblings to help them name big feelings
• Why prepared, informed kids tend to recover better
• A reminder for parents: you get to wear the cape too

Sponsors & Show Support:

• Stronger Hearts Foundation: strongerheartsfoundation.com
• Instagram: @strongerheartsfoundation
• Follow Doc JC on Instagram
• Support Tiny Little Hearts — 10% of listener proceeds go to Stronger Hearts Foundation
• Register for Move with Heart  with Project 1 in 100
• Register for the Co-Op with HeartWorks
• Purchase Adventures with Doc JC: The Unseen Planet

Let’s Connect!

• Follow me on Instagram @tinylittleheartspodcast
• Follow me on Substack at Tiny Little Hearts Substack
• This episode was brought to you by the Pivot Ball Change Network.
• Keywords: congenital heart disease,caregiver burnout, medical parent burnout, child life specialist, medically complex child, hospital parent support, caregiver self-care
  
  

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Summary:

Sheridan Waits has spent 19 years as a pediatric cardiology nurse practitioner. She's cared for hundreds of heart families in the ICU. But 13 years into her career, everything changed when her own daughter, Mabry, was diagnosed in utero with heterotaxy — a rare condition including a right-sided stomach, double outlet right ventricle, TGA, multiple VSDs, and pulmonary stenosis. Overnight, Sheridan became both provider and heart mom.

In this conversation, we talk about:

• The moment Sheridan's own fetal ultrasound turned into a diagnosis she recognized before the doctor even finished explaining it
• What it's like to sit in the same waiting rooms and hear the same conversations she'd walked past for years as a provider
• The guilt of wondering if her own CHD history played a role
• How "small victories" look different when you've watched your child fight for every milestone
• What she's learned about perspective — for families in the ICU for a day, and families there for months
• How faith and medicine have worked together, not against each other, in Mabry's story
• Mabry today: six years old, playing soccer, chasing a backhand spring, and living fully

This episode is for anyone who has ever sat bedside and wondered how life could look normal again — and for the providers who walk beside them every day.

Sponsors & Show Support:

• Stronger Hearts Foundation: strongerheartsfoundation.com
• Instagram: @strongerheartsfoundation
• Support Tiny Little Hearts — 10% of listener proceeds go to Stronger Hearts Foundation
• Register for the Co-Op with HeartWorks

Let’s Connect!

• Follow me on Instagram @tinylittleheartspodcast
• Follow me on Substack at Tiny Little Hearts Substack

Keywords: congenital heart disease, heterotaxy, double outlet right ventricle, transposition of the great arteries, VSD, ventricular septal defect, pulmonary stenosis, martial septal defect, fetal echocardiogram, fetal echo, biventricular repair, heart surgery recovery.

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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 being "the strong one" in her family, her role in HeartWorks' groundbreaking stem cell clinical trial, and how she co-founded Project 1 in 100, a community-first movement connecting CHD patients and families across every diagnosis. This episode isn't about the heart defect — it's about the heart future. What's possible. What it looks like to grow up, grow older, and grow into a life this full.

• Connect with Kelly on Instagram: @KDimaggio1123
• Project 1 in 100: @project1in100

Sponsors & Show Support:

• Stronger Hearts Foundation: strongerheartsfoundation.com
• Instagram: @strongerheartsfoundation
• Support Tiny Little Hearts — 10% of listener proceeds go to Stronger Hearts Foundation
• Register for the Co-Op with HeartWorks

Let’s Connect!

• Follow me on Instagram @tinylittleheartspodcast
• Follow me on Substack at Tiny Little Hearts Substack
• This episode was brought to you by the Pivot Ball Change Network.

Keywords: congenital heart disease, hlhs, hypoplastic left heart syndrome, mental health, toxic positivity, chd, heart community, clinical trials, stem cell research

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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 potential schools
08:37 Emotional journey and parental resilience
12:26 Communicating her child's medical background to teachers
15:26 Supporting her child's growth and independence
18:34 Ensuring safety and medical preparedness at school
21:00 Balancing advocacy with normal childhood experiences
23:51 Advocacy and community awareness
26:46 Reflecting on progress and future steps

Sponsors & Show Support:

• Stronger Hearts Foundation: strongerheartsfoundation.com
• Instagram: @strongerheartsfoundation
• Support Tiny Little Hearts — 10% of listener proceeds go to Stronger Hearts Foundation
• Register for the Co-Op with HeartWorks

Let’s Connect!

• Follow me on Instagram @tinylittleheartspodcast
• Follow me on Substack at Tiny Little Hearts Substack
• This episode was brought to you by the Pivot Ball Change Network.

Keywords: CHD, preschool, advocacy, special needs, parenting, medical accommodations, education, community, empathy, inclusion

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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 collision of those two worlds.

They trace Cole's path from a scary moment on a pickleball court to building a following of thousands sharing his story. They talk about Goldie's own HLHS diagnosis, the in-utero intervention that changed her trajectory, and how her case became Shone's complex instead. They get honest about the vulnerability and burnout that come with sharing a medical journey online, and why neither of them are chasing followers — just the right person, at the right time, who needs to hear it. And they close with their shared experience at the National CHD Advocacy Summit in DC, including Cole's interview with Senator Dick Durbin, and the piece of advice they'd both give a brand-new heart parent.

If you've ever wondered what it looks like to turn a hard diagnosis into a platform for hope, this one's for you.

Cole is a 20-year-old living with hypoplastic left heart syndrome (HLHS) and the founder of Half Heart Mission, a platform where he shares his journey with CHD to give patients and parents hope for the future. He's had three open-heart surgeries (Norwood, Glenn, Fontaine) and grew up playing competitive basketball and golf before starting his platform on TikTok, which has since grown into a large, engaged CHD community.

Resources & Links

• Half Heart Mission: Instagram/TikTok @halfheartmission

Sponsors & Show Support:

• Stronger Hearts Foundation: strongerheartsfoundation.com
• Instagram: @strongerheartsfoundation
• Support Tiny Little Hearts — 10% of listener proceeds go to Stronger Hearts Foundation
• Register for the Co-Op with HeartWorks

Let’s Connect!

• Follow me on Instagram @tinylittleheartspodcast
• Follow me on Substack at Tiny Little Hearts Substack
• This episode was brought to you by the Pivot Ball Change Network.

Keywords: congenital heart disease, chd, podcaster, content creators, hlhs, hypoplastic left heart syndrome, 

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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 drastically fewer medical supplies than before, reconnecting with family who'd never met Goldie in person, and the gratitude that comes with a season of stability.

Looking ahead, Katelyn previews what's coming in Season 2: conversations with authors and CHD foundations doing meaningful work in the advocacy space, and a new series exploring the "messy middle" of medical motherhood — the identity shifts, the fear that coexists with hope, and the reality of raising a child with CHD once the acute crises are behind you.

Katelyn also shares a personal update: Goldie is starting preschool this fall, and new episodes will now release every other week.

In this episode:

• A summer travel milestone, three years in the making
• Reflecting on stability, grief, and gratitude as a heart mom
• A first look at Season 2: authors, foundations, and the messy middle of motherhood
• What's next for the podcast schedule

Sponsors & Show Support:

• Stronger Hearts Foundation: strongerheartsfoundation.com
• Instagram: @strongerheartsfoundation
• Support Tiny Little Hearts — 10% of listener proceeds go to Stronger Hearts Foundation
• Register for the Co-Op with HeartWorks

Let’s Connect!

• Follow me on Instagram @tinylittleheartspodcast
• Follow me on Substack at Tiny Little Hearts Substack
• This episode was brought to you by the Pivot Ball Change Network.

Keywords: Tiny Little Hearts podcast, CHD mom, heart mom, congenital heart disease podcast, CHD, traveling with a medically complex child, heart warrior milestones, CHD stability, medical motherhood, messy middle of motherhood, heart mom identity, CHD advocacy

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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 families can feel less alone, more informed, and genuinely supported. From vulnerable guest conversations to listener stories that have poured in from heart parents across the country, Season 1 has been more than Katelyn ever hoped for when she hit record on that first episode.

In this episode, Katelyn shares:

• A reflection on Season 1 — the guests, the topics, and the CHD parent community moments that meant the most
• A personal and honest update on why she's pausing new episode releases for the summer — and how editing last week's episode with Katie Taylor of Child Life on Call about medical parent emotional burnout made her stop and listen to her own instincts
• What's coming in Season 2, launching in early August — including deeper conversations, more expert voices, and new topics for heart families
• How you can support the show during the break (hint: share it with a CHD parent who needs it)

Whether you're newly diagnosed, years into your congenital heart disease journey, or somewhere in the messy middle — this episode is a reminder that you are not walking this road alone.

Sponsors & Show Support:

• Stronger Hearts Foundation: strongerheartsfoundation.com
• Instagram: @strongerheartsfoundation
• Support Tiny Little Hearts — 10% of listener proceeds go to Stronger Hearts Foundation
• Register for the Co-Op with HeartWorks

Let’s Connect!

• Follow me on Instagram @tinylittleheartspodcast
• Follow me on Substack at Tiny Little Hearts Substack
• This episode was brought to you by the Pivot Ball Change Network.

Keywords: congenital heart disease,caregiver burnout, medical parent burnout, child life specialist, medically complex child, hospital parent support, caregiver self-care

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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 brings both clinical expertise and genuine warmth to this topic that doesn't get nearly enough airtime.

In this episode:

• What caregiver burnout actually looks like from the bedside — and why it's so hard to recognize when you're in it
• The moment a nurse gave Katelyn and her husband permission to rest during one of Goldie's hospitalizations — and what it taught her about sustainable caregiving
• Why the transition home from the hospital can be more overwhelming than the hospitalization itself
• The difference between traditional "treat yourself" self-care and what actually works — including the concept of "mothering yourself" (backed by research!)
• Why phrases like "you're so strong" can feel isolating for medical parents, and how that experience evolves over time
• Katie's three-pillar framework from trauma-informed care: safety, community, and voice — and how to use it to ride the burnout wave

Resources & Links:

• Follow Katie Taylor on Instagram @childlifeoncall
• Listen to Katie’s Podcast: Inside The Children's Hospital
• Jen Hatmaker (author, Austin TX) and her concept of "mothering yourself"
• The Rare Life podcast with Madeleine
• Once Upon a Gene podcast with Effie
• We Are Brave Together  with Jessica
• Raising Disabled podcast
• Research Statement: Studies consistently show that brief moments of self-care throughout the day are more sustainable than waiting for large chunks of time that may never come.

Article: Yilmaz Balban, M., Neri, E., Kogon, M. M., Weed, L., Nouriani, B., Jo, B., Holl, G., Zeitzer, J. M., Spiegel, D., & Huberman, A. D. (2023). Brief structured respiration practices enhance mood and reduce physiological arousal. Cell Reports Medicine, 4(1), 100895. https://doi.org/10.1016/j.xcrm.2022.100895

Sponsors & Show Support:

• Stronger Hearts Foundation: strongerheartsfoundation.com
• Instagram: @strongerheartsfoundation
• Support Tiny Little Hearts — 10% of listener proceeds go to Stronger Hearts Foundation
• Register for the Co-Op with HeartWorks

Let’s Connect!

• Follow me on Instagram @tinylittleheartspodcast
• Follow me on Substack at Tiny Little Hearts Substack
• This episode was brought to you by the Pivot Ball Change Network.

Keywords: congenital heart disease,caregiver burnout, medical parent burnout, child life specialist, medically complex child, hospital parent support, caregiver self-care

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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 goal: to elevate congenital heart disease as a national health policy priority. Whether you were able to join this year or not, this episode is packed with encouragement, insight, and a challenge to every CHD family to use their voice.

In this episode:

• Advocacy at local and national levels
• Community strength and collaboration among foundations
• Importance of staying informed on research and innovations
• Storytelling as a tool for awareness and hope
• The unstoppable nature of the CHD community

Resources & Links:

• Stronger Hearts Foundation: strongerheartsfoundation.com
• Instagram: @strongerheartsfoundation
• Support Tiny Little Hearts — 10% of listener proceeds go to Stronger Hearts Foundation
• Register for the Co-Op with HeartWorks
• Every Hundredth Heart Coalition — everyhundredthheart.org
• National CHD Advocacy Summit — hosted annually through the Every Hundredth Heart Coalition

Let’s Connect!

• Follow me on Instagram @tinylittleheartspodcast
• Follow me on Substack at Tiny Little Hearts Substack
• This episode was brought to you by the Pivot Ball Change Network.

Keywords: congenital heart disease advocacy · CHD advocacy summit · National CHD Advocacy Summit · Every Hundredth Heart Coalition · Capitol Hill advocacy · heart mom podcast · CHD awareness · congenital heart defect resources · CHD foundations · pediatric heart disease · heart warrior · CHD community · advocacy for rare disease · CHD research · heart parent · stronger hearts foundation · CHD storytelling · CHD funding · congenital heart disease statistics · Washington DC health advocacy

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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-approved clinical trials to transplant patients' own heart muscle cells, grown from a skin biopsy, to literally rebuild damaged hearts. Tim's core philosophy: "Tissue is the issue."

They also discuss the CHD Co-op — a patient-owned data platform that matches families to clinical trials, and gives researchers a pre-qualified participant pool to dramatically accelerate timelines. Because your medical record belongs to you, not the hospital.

Key Topics Covered

• What HeartWorks does and how cell-based tissue engineering works
• Why "tissue is the issue" for congenital heart disease
• The three phases that shaped Tim's understanding of healthcare's failures
• The tension between evidence-based medicine and clinical innovation
• Risk tolerance, the "principle of uncertainty," and how families and care teams navigate clinical trials together
• Why moms are the most powerful force in moving the CHD community forward
• The role of parent engagement in hospital care and bedside decision-making
• How the CHD Co-op works and why patient-owned data changes everything
• HIPAA myths: you own your medical record, not the hospital
• How aggregated patient data can compress clinical trial timelines from years to weeks
• Equalizing access to cutting-edge care for patients in rural America
• Why thriving stories — not hospital stories — are the ones that move the CHD world forward

Keywords

congenital heart disease, CHD, HeartWorks, tissue engineering, heart muscle cells, cell therapy, FDA clinical trial, HLHS, hypoplastic left heart syndrome, in utero intervention, fetal cardiac intervention, CHD co-op, patient data, medical data ownership, HIPAA, clinical trial enrollment, heart parent, heart mom, cardiac surgery, patient advocacy, CHD community, Mayo Clinic, Fontan circulation, pulmonary hypertension, pediatric heart disease, congenital heart defect awareness, healthcare innovation, healthcare system reform, patient empowerment

Websites & Resources Referenced

• HeartWorks —WeBuildHearts.org
• The CHD Co-op — Available through HeartWorks; visit https://heartworksinc.org/co-op

Resources & Links:

• Stronger Hearts Foundation: strongerheartsfoundation.com
• Instagram: @strongerheartsfoundation
• Support Tiny Little Hearts — 10% of listener proceeds go to Stronger Hearts Foundation
• Use the code TINYLITTLEHEARTS for 10% off Better Days Co

Let’s Connect!

• Follow me on Instagram @tinylittleheartspodcast
• Follow me on Substack at Tiny Little Hearts Substack

This episode was brought to you by the Pivot Ball Change Network.

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