Understanding Homocystinuria (HCU): How one Mother Uncovered her Son’s Diagnosis
Release Date: 12/03/2025
From Peds Nurse to Cancer Mom: What Helped her Child Cope
Inside the Children's Hospital | Parent Stories, Pediatric Healthcare & What Families Want You to Know
Pediatric nurse and mom Brigid shares how her family navigated her son’s neuroblastoma diagnosis—with practical guidance on preparing kids for care, accepting support, and finding hope. Key Topics: The symptoms that led to Brigid’s son’s neuroblastoma diagnosis Going from pediatric nurse to parent receiving life-changing medical news Using medical play to prepare young children for procedures Giving children choices and control during repeated medical care Why slowing down can sometimes make procedures easier Supporting siblings through a cancer diagnosis Caring for...
info_outline
My Daughter Had a Brain AVM: Advocacy, Medical Trauma, and Hope
Inside the Children's Hospital | Parent Stories, Pediatric Healthcare & What Families Want You to Know
As we begin to close out NICU Awareness Month, Katie sits down with Matilda “Tilly” Aldridge, a content marketer and mom. During a normal morning, Adelaide, her oldest child, was rushed to the hospital after Tilly and her husband heard Adelaide screaming from her room. She was given a CT scan, and a large tumor was found in her brain. Tilly recounts her experience not only dealing with the sudden occurrence of Adelaide’s medical emergency, but also how Adelaide herself was able to overcome the trauma she suffered. Together, Tilly and Katie dig into what advocating for answers can...
info_outline
The Long-term Effects of Short-term Medical Decisions: A parent's story of NEC, the NICU and Short Bowel Syndrome
Inside the Children's Hospital | Parent Stories, Pediatric Healthcare & What Families Want You to Know
Welcome back to NICU Awareness Month. In this episode, Katie is sitting down with Kim Holland, mom of Tripp who was born at 27 weeks and also developed NEC. NEC, or , which caused Tripp to undergo multiple surgeries and spend months in the NICU. Kim delves into the raw emotions she went through during her pregnancy with Tripp and his stay in the NICU as she had to make tough medical decisions. She also gives us some insight into how she coped and was ultimately able to create a new normal after the NICU. Katie and Kim speak on how to build community and support during a time of healing...
info_outline
Best Children's Hospitals (US News): What Parents Need to Know
Inside the Children's Hospital | Parent Stories, Pediatric Healthcare & What Families Want You to Know
How U.S. News Ranks Children’s Hospitals—and What Parents Should Know Every year, U.S. News & World Report releases its Best Children’s Hospitals rankings—but what do those rankings actually tell families? In this episode, Katie Taylor, CCLS, speaks with Jennifer Winston, senior health data scientist at U.S. News & World Report, about how the rankings are built, what the scores measure and how parents can use them without over-reading small differences between hospitals. Jennifer explains the role of clinical outcomes, hospital resources and care practices in the rankings,...
info_outline
The NICU Waiting Game: NICU Awareness Month
Inside the Children's Hospital | Parent Stories, Pediatric Healthcare & What Families Want You to Know
Continuing NICU Awareness Month, in this week’s episode, Katie is talking to Emily Rosen, the author of Waiting for Max: A NICU Story. Emily is a mom to 2 children, Max and Eva. Emily’s book is about her experience being a parent in the NICU, with the hopes that the book can help communicate with other NICU families that they aren’t alone in this journey. Throughout the episode, Emily details the emotions she went though as a parent, along with giving advice as to how to navigate new and possibly frightening feelings that came be brought on. Together, Emily and Katie walk through...
info_outline
GalTheBabyDoc: Humor + Humanity in the NICU
Inside the Children's Hospital | Parent Stories, Pediatric Healthcare & What Families Want You to Know
September is NICU Awareness Month, and in this week’s episode, Katie sits down with Dr. Gal, @galthebabydoc, a Neonatologist and Pediatrician, and a dad with experience as a parent in the NICU. He shares his knowledge and experience on social media in digestible ways to help parents and others feel comfortable during difficult times. Throughout the episode, they delve into the experiences and emotions of what parents might be facing when their baby is in the NICU, and how parents can get the most out of communicating with the hospital’s healthcare providers. Dr.Gal, having experience on...
info_outline![How to Talk to Kids About the Things We Wish They Didn’t Have to Face [Palliative Care] show art](https://assets.libsyn.com/content/205427365?height=50&width=50)
How to Talk to Kids About the Things We Wish They Didn’t Have to Face [Palliative Care]
Inside the Children's Hospital | Parent Stories, Pediatric Healthcare & What Families Want You to Know
How do families navigate a serious childhood diagnosis while still focusing on hope, quality of life, and the everyday moments that matter most? In this episode of Inside the Children's Hospital Podcast, Katie Taylor sits down with Dr. Korie Leigh, PhD, CCLS, a child life specialist, psychologist, thanatologist, author, educator, and pediatric palliative care advocate. Drawing on more than two decades of supporting children and families, Dr. Leigh shares what pediatric palliative care really is—and why it is so much more than many families believe. Together, they explore how pediatric...
info_outline
Helping Kids Cope With Needles: The Science Behind Buzzy
Inside the Children's Hospital | Parent Stories, Pediatric Healthcare & What Families Want You to Know
In this episode of Inside the Children's Hospital Podcast, Katie Taylor sits down with Dr. Amy Baxter, pediatric emergency physician, researcher, inventor of , and founder of , to explore how childhood experiences with needles can shape a lifetime of healthcare interactions—and what parents and healthcare professionals can do to help. After watching her own son develop a fear of needles despite her expertise in pediatric pain management, Dr. Baxter began researching why children experience pain differently and how simple, evidence-based strategies can reduce pain during vaccines, blood...
info_outline
When You Become Your Child’s Advocate Overnight
Inside the Children's Hospital | Parent Stories, Pediatric Healthcare & What Families Want You to Know
What happens when the child you've dreamed of suddenly receives a diagnosis you've never even heard of? For Deborah, it was Angelman syndrome. In this episode of Inside the Children's Hospital Podcast, Katie Taylor sits down with Deborah Trejo, Art Therapist, to share the powerful story of her daughter Maya's journey to an Angelman syndrome diagnosis. After months of feeding difficulties, developmental delays, seizures, and countless unanswered questions, Deborah and her family finally received a diagnosis just one day after Maya's first birthday. Deborah opens up about the emotional realities...
info_outline
Doctor Visits, Diagnoses, and Difficult Conversations: A Parent's Guide to Knowing What to Say
Inside the Children's Hospital | Parent Stories, Pediatric Healthcare & What Families Want You to Know
What do you do when your child receives a diagnosis and your mind suddenly goes blank? Whether you're hearing difficult news for the first time or preparing your child for a medical procedure, knowing what to ask—and how to support your child—can feel overwhelming. In this episode of Inside the Children's Hospital, Katie Taylor, Certified Child Life Specialist, is joined by Dr. Mona Amin, board-certified pediatrician, founder of and Chief Medical Officer at , for an honest conversation about helping families navigate some of the hardest moments in healthcare. Together, they share...
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
-
Early signs Masen showed (or didn’t show) before diagnosis
-
How a routine eye exam led to life-changing discoveries
-
What HCU is, and why newborn screening only catches ~50% of cases
-
How metabolic diets work—and why the formula is so hard for kids
-
Talking to kids about scary changes in simple, honest language
-
Navigating back-to-back eye surgeries
-
How parents balance their own needs while supporting their child
-
Building resilience without expecting perfection
-
The power of community: conferences, meetups, Facebook groups
-
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…
-
“My heart was racing. I knew something was off.”
-
“Most doctors have never even heard of HCU.”
-
“The formula tastes terrible, but it keeps him healthy.”
-
“You can be proud of your child’s resilience and still wish they didn’t need it.”
-
“This should have been caught at birth—we want to change that for future kids.”
Resources & Links
HCU & Metabolic Disorder Communities
-
HCU Network America (Instagram: @hcunetwork_america)
-
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.