Understanding Homocystinuria (HCU): How one Mother Uncovered her Son’s Diagnosis
Inside the Children's Hospital
Release Date: 12/03/2025
Healing After the NICU: Processing Trauma, Loss, and Your Family's Story
Inside the Children's Hospital
This week’s guests, perinatal mental health therapists Emily Souder and Mahaley Patel, share the story behind their book Your NICU Story: Reflecting on Your Family’s Experience—a guided journal created to help families process the emotional impact of a NICU stay. Mahaley also opens up about her daughter, Sachi, who died after a NICU stay, and how storytelling and narrative healing became a lifeline in her grief. She and Emily talk with Katie about why so many NICU parents carry trauma long after discharge and how writing your story can help families reconnect with what they experienced....
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Trust, Grief, and Loving Your Child Through Big Identity Changes
Inside the Children's Hospital
What happens when your child shares something that shifts the future you thought you understood? In this episode of Inside the Children’s Hospital, Katie sits down with Kelly Kemp — certified child life specialist of more than 30 years and mom of three — to talk about navigating trust, grief, advocacy, and love after her child was diagnosed with gender dysphoria and came out as transgender. Kelly shares: The phone call that changed everything Navigating substance use and mental health concerns Grieving privately while choosing love publicly Rebuilding trust with her...
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Helping Kids Navigate Physical Differences: Child Life Strategies for Confidence, Curiosity & Resilience
Inside the Children's Hospital
How do you help a child respond when someone asks about a scar, burn, or limb difference? This week’s guest, Abby Horton, opens up about her journey as a Child Life Specialist working across ICU, burn, surgical, rehab, and inpatient settings—and how those experiences shaped the way she supports families navigating physical differences. From sudden trauma and accidents to limb differences, burn injuries, surgical scars, and hair loss from chemotherapy, Abby shares how parents can gently empower their children to own their story with confidence. She and Katie discuss simple, age-appropriate...
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Micro Preemie at 25 Weeks: A NICU Mom’s Journey
Inside the Children's Hospital
This week's guest opens up about the shock of an emergency C-section at 25 weeks and 3 days, the fear of entering the NICU for the first time, and the powerful role Child Life Specialists played in supporting not only Vincent, but their entire family, including his older brother. She reflects on what helped her cope during long NICU days, how she advocated for herself using her healthcare background, and what she wishes she had known about the “medically complex” label sooner. This episode explores sibling bonding in the NICU, the impact of a truly integrated care team, the importance of...
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Tube Feeding Awareness: Lived Experience, Real Talk, and Hope for the Future
Inside the Children's Hospital
When tube feeding enters your life—whether at birth, in childhood, or adulthood—it can feel overwhelming, isolating, and misunderstood. In this special live episode of Inside the Children’s Hospital, we center the voices of those with lived experience to explore what tube feeding really looks like beyond the diagnosis and discharge instructions. Host Katie Taylor is joined by parent advocates, a young adult patient, and a pediatric dietitian to share honest, unfiltered perspectives on NG tubes, G-tubes, GJ tubes, and blended feeds. Together, they discuss early fears and misconceptions,...
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How Camp Supports Healing, Play, and Belonging for Medically Complex Kids
Inside the Children's Hospital
When your child’s life is shaped by medical complexity, childhood can quickly become defined by hospital stays, procedures, and limitations. In today’s episode, we explore how medically supported camps transform that narrative—creating space for joy, belonging, and healing for children, families, and even healthcare providers themselves. Katie Taylor is joined by Dr. Laura Blaisdell, Chief Medical Officer of SeriousFun Children’s Network, and Jamie Gentille, Child Life Specialist Leader and former camper, to share the life-changing impact of camp for children with serious illnesses....
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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...
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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...
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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...
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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_outlineMelanie, 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 the power of connection.
Why this episode matters
Rare disease reality: What it feels like to navigate a diagnosis most clinicians have never seen
Caregiver intuition: How a parent’s sense that “something isn’t right” can spark life-saving action
Practical communication: Age-appropriate ways to explain health changes, procedures & dietary needs
Health equity & systems gaps: When newborn screening misses what should have been caught
Hope forward: The resilience of kids—and the strength families build together
What You’ll Learn
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Early signs Masen showed (or didn’t show) before diagnosis
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How a routine eye exam led to life-changing discoveries
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What HCU is, and why newborn screening only catches ~50% of cases
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How metabolic diets work—and why the formula is so hard for kids
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Talking to kids about scary changes in simple, honest language
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Navigating back-to-back eye surgeries
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How parents balance their own needs while supporting their child
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Building resilience without expecting perfection
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The power of community: conferences, meetups, Facebook groups
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Advocating for improved newborn screening for future families
Timestamps
00:00 Meet Melanie & Masen: family intro, life in Vancouver
01:23 Sports, hockey, and life surrounded by nature
01:56 Routine eye exam → the moment everything changed
03:38 The optometrist’s concerns & the start of uncertainty
04:01 Google panic, calling providers, needing answers
04:55 Keeping fears private during COVID
07:38 Mother’s Day call: the rare diagnosis finally revealed
07:47 What HCU is and why newborn screening misses it
10:45 Treatment basics: low protein & metabolic formula
11:19 Explaining diagnosis to an eight-year-old
13:14 Parenting through fear while staying regulated
14:52 “Eat the prawns in the pantry”—navigating food changes
17:29 Building resilience while validating hard feelings
18:31 Finding community online & through HCU conferences
20:41 Masen meets other kids with HCU
22:33 Advocacy: improving newborn screening across Canada
24:28 Social media vs. real-life progress
24:58 Masen’s eye surgeries & long-term vision care
27:46 What parents can request if concerned about HCU
30:22 Trusting your care team & staying curious
30:51 Who Masen is beyond a diagnosis
34:22 Where to learn more about HCU
Melanie shares that…
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“My heart was racing. I knew something was off.”
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“Most doctors have never even heard of HCU.”
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“The formula tastes terrible, but it keeps him healthy.”
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“You can be proud of your child’s resilience and still wish they didn’t need it.”
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“This should have been caught at birth—we want to change that for future kids.”
Resources & Links
HCU & Metabolic Disorder Communities
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HCU Network America (Instagram: @hcunetwork_america)
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CANPKU+ (Instagram: @canadian.pku)
SupportSpot App (by Child Life On Call)
Procedure guides, coping plans, journals, and parent resources to help families feel prepared and advocate with confidence.
Learn more here.
Meet the host:
Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.
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.