Down Syndrome with Heart Defects (AVSD): Managing Pulmonary Hypertension [Encore]
Inside the Children's Hospital
Release Date: 08/27/2025
Rare Lung Disease, Epilepsy and the Diagnostic Journey
Inside the Children's Hospital
When your child survives one medical emergency only to face another, parenting becomes a constant act of advocacy and courage. Today’s guest joins us to share her daughter's journey with rare and complex medical conditions, from early respiratory failure and unexplained hospitalizations to epilepsy, lung disease, and life with medical uncertainty. As a military spouse navigating deployments, Brittany shares what it means to walk this path largely alone, trust her instincts as a mother, and fight to be believed by medical professionals. This episode explores navigating rare disease without...
info_outline
Severe Hemophilia: A Newborn, A Brain Bleed, and PICU Experience
Inside the Children's Hospital
When your newborn is healthy one moment and rushed to the PICU the next, life can change in an instant. Today’s guest joins us to share her son’s journey with severe hemophilia—from unexpected bleeding after a routine circumcision to a spontaneous brain bleed, emergency surgery, and a months-long PICU stay. This episode explores being thrust into medical motherhood, learning to advocate under unimaginable stress, and how community, child life, and modern medicine help families navigate life with a complex diagnosis. Download our free to help empower your child and family during hospital...
info_outline
When Insurance Isn’t Enough: A Parent’s Type 1 Diabetes Story
Inside the Children's Hospital
When your child receives a new medical diagnosis, it can feel like the world shifts beneath your feet. Today’s guest joins Katie Taylor to share her daughter’s Type 1 Diabetes journey—from dismissing "textbook" symptoms to navigating the financial challenges of families when it comes to chronic illness. This episode explores how one Mom moved from denial to "work mode" and how the HealthWell Foundation helps families afford life-saving medications. Sponsored in part by —learn how you can help families afford life-saving medications at healthwellfoundation.org. Download our...
info_outline
New Diagnosis: What to Do When Your Child Gets Diagnosed
Inside the Children's Hospital
When your child receives a new medical diagnosis, it can feel like the world shifts beneath your feet. Here’s how to move forward with clarity, support and connection, hosted by Katie Taylor and the Inside the Children's Hospital podcast. Listen to more stories at insidethechildrenshospital.com. Medical information provided is not a substitute for professional advice—please consult your care team. Sponsored in part by HealthWell Foundation—learn how you can help families afford life-saving medications at healthwellfoundation.org. Keywords: children’s hospital, NICU, child life...
info_outline
Launching Inside the Children's Hospital: What Listeners Can Expect
Inside the Children's Hospital
Hear the story behind Child Life on Call's transformation into Inside the Children’s Hospital. Discover what’s next for families seeking support and real hospital stories. Listen to more stories at insidethechildrenshospital.com. Medical Legal Disclaimer: This podcast is for informational purposes only and does not constitute medical advice. Always consult your healthcare provider for guidance about your child’s health.
info_outline
3 Proven Strategies for Parents Navigating Pediatric Healthcare in 2025
Inside the Children's Hospital
Feeling alone after your child's diagnosis? Discover three powerful lessons that have changed how families find hope, support, and confidence while navigating pediatric healthcare. In this solo episode, child life specialist Katie Taylor distills eight years of conversations with hundreds of families into three essential takeaways every parent needs when thrust into the pediatric healthcare world. If you're overwhelmed by medical decisions, uncertain about switching providers, or searching for ways to support your child—and yourself—during hospital life, this episode offers tangible steps...
info_outline
A Father's Journey Through Loss, Healing, and the Birth of a Rainbow Baby: Jeff's Story
Inside the Children's Hospital
In this profoundly moving and honest conversation, we sit down with Jeff Loving, a NICU dad, husband, and now an author, who shares the intimate and often unspoken grief experienced by fathers after pregnancy loss. Jeff walks us through the heartbreaking loss of his two sons, Davian and Jadon, the struggle to find empathy and appropriate medical care, and how these experiences ultimately led him and his wife, Cassie, to become fierce advocates for their future family. This episode is a raw look at marriage under immense stress, the importance of empathetic medical staff, and the redemptive joy...
info_outline
Understanding Homocystinuria (HCU): How one Mother Uncovered her Son’s Diagnosis
Inside the Children's Hospital
Melanie, mom to 12-year-old Masen, shares the unexpected path to her son’s diagnosis with Homocystinuria (HCU) after a routine eye exam revealed something “off.” What followed was months of uncertainty, a rare diagnosis few providers had even heard of, a crash course in low-protein diets and metabolic formulas, and two back-to-back eye surgeries to prevent further damage. With gentleness, honesty, and deep advocacy, Melanie describes how they adjusted as a family, how Masen built resilience, and how finding community changed everything. A story of early detection, parent intuition, and...
info_outline
Autism, Advocacy and the Power of a Medical ID Bracelet
Inside the Children's Hospital
Tara Cohen opens up about her son Will’s autism diagnosis and how it transformed her family and career. From navigating meltdowns to discovering AAC as a communication lifeline, Tara shares her honest reflections on parenting, resilience, and hope. What began as a search for a medical ID bracelet led to a career at —where she now helps other families feel safe and supported. This heartfelt episode reminds caregivers that advocacy grows from love and that even small acts of compassion can make a life-changing difference. Timestamps 00:00 – Introduction 03:10 – Early diagnosis...
info_outline
When Your Baby is Diagnosed with Type 1 Diabetes: Marlee's Story
Inside the Children's Hospital
“My baby went from fussy to lifeless in hours—by the time we reached the PICU, they said he might have had six hours to live.” In this episode, TikTok Influencer and Medical Mom , a pediatric speech-language pathologist turned full-time mom, shares the whirlwind diagnosis of her 12-month-old son Bain with Type 1 diabetes and severe DKA, the traumatic hospital stay, and the everyday advocacy that followed. Raw, practical, and deeply hopeful. Why this episode matters Emotional clarity: what a Type 1 diagnosis really feels like in infancy Practical advocacy: scripts, choices, and...
info_outlineIn this reposted episode, Courtney shares her journey of receiving her daughter Annie’s Trisomy 21 diagnosis, navigating the NICU, and walking through open-heart surgery complicated by pulmonary hypertension. She talks about the power of community, the unexpected strength she discovered in herself, and how vulnerability and advocacy have shaped her motherhood. Courtney reminds us that love, connection, and collective wisdom can carry families through the hardest seasons while celebrating Annie’s resilient and joyful spirit.
Resources mentioned in this episode:
-
Annie Louise Foundation – A resource hub for parents and caregivers
-
Follow Courtney on Instagram
- Read Courtney's most recent blog post about how the Annie Louise Foundation helped with Central Texas Flood relief in Kerrville, TX
🎉 Special Thank You for Our Listeners! 🎉
We’re giving you free access to our most popular pediatric masterclasses — How to Prepare, Support, and Respond to Your Child During Shots, Blood Draws, and Vaccines and How to Use Comfort Positioning in Pediatrics — a $250 value, completely free! All you have to do is leave a written review of the Child Life On Call podcast on Apple Podcasts or Spotify, then email a screenshot of your review to podcast@childlifeoncall.com. Once we receive it, you’ll get instant access to both courses — no strings attached. It’s our way of saying thank you for listening and helping more parents discover our show. 💛
Keywords: Down Syndrome, Trisomy 21, congenital heart defect, VSD, pulmonary hypertension, NICU, ECMO, parent advocacy, child life, Spoony Threads, SupportSpot
The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided.