Inside the Children's Hospital

Inside the Children's Hospital

By Katie Taylor, Certified Child Life SpecialistMedicineHealth & FitnessParentingKids & Family
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Inside the Children's Hospital episodes

  • Win Bars for LSU Tiger Football and Aplastic Anemia Pediatric Patients

    During this week's episode, Katie sits down with Ryan Solieau, an LSU Alum, and dad to a Henry who was diagnosed with Aplastic Anemia. Aplastic Anemia is a rare blood disorder where bone marrow stops making new red blood cells, which appeared in Henry as a heart rate of 250.

    Ryan takes us through the experience of learning a new reality during all phases of Henry's diagnoses, from learning how to navigate Henry's initial hospital stay, all the way to supporting Henry emotionally during his monthly transfusions. In the episode, we also learn from Ryan how crucial it is to take care of oneself in order to be the best advocate for Henry.

    Timestamps

    1:37 - Intro to Ryan

    3:38 - The Hospital Experience: A Second Family

    6:24 - The Diagnosis: A Life-Changing Moment

    9:38 - Navigating the Medical System

    13:49 - Understanding Aplastic Anemia

    15:27 - The Roles of Fathers in Caregiving

    18:12 - Building Relationships with Hospital Staff

    20:44 - Recognizing Emotional Needs

    26:40 - Advice for Parents: Seeking Help and Support

    35:08 - Fatherhood and Personal Growth

    42:01 Navigating Medical Challenges and Triumphs

    Resources

    https://www.instagram.com/rsoile6

    To listen to more episodes, head to insidethechildrenshospital.com

    This podcast is for educational and informational purposes only and is not a substitute for medical advice, diagnosis, or treatment. Every child and family is different. Always talk with your child's healthcare team about questions or decisions related to their care.

    The experiences and opinions shared by guests are their own and do not necessarily represent the views of their employers, healthcare organizations, or Inside the Children's Hospital.

    47 min
  • From Peds Nurse to Cancer Mom: What Helped her Child Cope

    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 yourself while caring for a seriously ill child

    • Asking for and accepting practical support from others

    • Resources including Beads of Courage, Connecting Champions, and neuroblastoma-specific preparation tools

    Timestamps

    00:00 - Finding support through childhood cancer stories 01:11 - Brigid introduces her family 01:38 - Penn State THON and supporting families facing cancer 03:21 - The first sign: a persistent limp 04:55 - Night sweats, an ER visit, and the diagnosis 05:18 - Understanding neuroblastoma and treatment 06:31 - Receiving serious news in the hospital where Brigid works 10:28 - Being both mom and medical translator 11:32 - Why preparing children for procedures matters 12:52 - Medical play and repeated procedures 14:08 - Choices, breaks, and helping kids feel more in control 15:09 - Practicing dressing changes through play 16:49 - Why faster isn't always easier for kids 18:34 - The hard days and emotional toll of treatment 20:36 - Stem cell transplant and the hardest phase of treatment 21:34 - Prayer, gratitude, and staying grounded 25:31 - Simple medical play using things you already have 27:58 - Explaining cancer to siblings 28:28 - Bringing support into a sibling's school 31:12 - Child life tools that can help with procedures 34:09 - Taking cancer treatment one hurdle at a time 35:22 - What asking for help looked like for Brigid's family 39:36 - Connecting Champions and identity beyond cancer 41:00 - Beads of Courage 42:01 - Neuroblastoma resources and medical play tools 43:32 - What Brigid learned about control, patience, and time

    To listen to more episodes, head to insidethechildrenshospital.com

    This podcast is for educational and informational purposes only and is not a substitute for medical advice, diagnosis, or treatment. Every child and family is different. Always talk with your child's healthcare team about questions or decisions related to their care.

    The experiences and opinions shared by guests are their own and do not necessarily represent the views of their employers, healthcare organizations, or Inside the Children's Hospital.

    48 min
  • My Daughter Had a Brain AVM: Advocacy, Medical Trauma, and Hope

    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 entail, and finding joy in the aftermath.

    Timestamps

    1:40 - Introduction to Tilly's Journey

    4:28 - Navigating Parenthood During COVID

    7:21 - Impact of Postpartum Depression

    10:41 - Life-Altering Medical Emergency

    13:18 - Understanding AVIM

    16:10 - The Road to Recovery

    22:13 - Managing Anxiety in Children

    25:17 - Empowering Children Through Choices

    32:04 - The Impact of Medical Trauma

    37:00 - The Search for Answers

    43:57 - The Fight for Medical Attention

    49:07 - The Joys of Motherhood Post-Trauma

    Resources

    What is AVM

    What is AVF

    Medical information shared in this episode is not a substitute for professional medical advice. Please consult your healthcare team for guidance specific to your child and family.

    1 hr
  • The Long-term Effects of Short-term Medical Decisions: A parent's story of NEC, the NICU and Short Bowel Syndrome

    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 Necrotizing Enterocolitis, is the inflammation of the intestine that often leads to the death of intestinal tissue/lining, 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 for all parents.

    Timestamps

    00:00 - Introduction

    1:30 - Kim's Family and Background

    4:18 - Emergency C-Section and Preeclampsia Experience

    7:39 - Tripp's Birth and NICU Journey

    10:20 - Navigating the NICU

    13:28 - Understanding NEC and its Impact

    16:33 - Surgery and the Role of Faith

    19:25 - Post-Surgery and Ongoing Challenges

    34:57 - The Grim Reality of Medical Decisions

    46:28 - Coping Mechanisms in the NICU

    54:26 - Life After the NICU

    58:34 - Building Community and Support

    Medical information shared in this episode is not a substitute for professional medical advice. Please consult your healthcare team for guidance specific to your child and family.

    1 hr 5 min
  • Best Children's Hospitals (US News): What Parents Need 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, along with how parent feedback is incorporated into the methodology. Katie brings in the child life perspective, asking where psychosocial support, interpreter services, family involvement and emotional safety fit into the definition of excellent pediatric care.

    They also explore an important question for families: Is traveling to a nationally ranked hospital always better, or can receiving care closer to home sometimes matter more?

    What you'll learn
    • How the Best Children's Hospitals rankings have evolved from clinician surveys into a data-heavy model involving more than 1,000 data points across 11 pediatric specialties

    • The three primary scoring categories: hospital resources, delivery of care and best practices, and clinical outcomes

    • Why the outcomes being measured vary by specialty

    • How child life specialists, social workers, interpreter services and parent participation are represented in the rankings

    • How feedback from parents and patient advocates reaches the teams shaping the methodology

    • What it means for a hospital to make the national Honor Roll

    • Why a move from No. 15 to No. 20 may represent only a very small difference in score

    • When traveling for highly ranked care may be helpful—and when proximity to home matters

    • How families can use regional rankings, state rankings and hospital scorecards to look beyond one overall number

    • Why increased hospital participation may signal a growing commitment to transparency

    Explore the rankings

    View the official U.S. News Best Children's Hospitals rankings.

    Parents can also search for pediatric hospitals and care by location or specialty.

    Rather than relying only on a hospital's overall rank, families can explore individual specialty rankings and hospital scorecards to learn more about outcomes, staffing, available services and other factors that may matter for their child.

    Episode timestamps
    • 00:00 — Katie opens with the show's purpose and introduces Jennifer Winston

    • 00:17 — Jennifer shares her role at U.S. News and her background in medical geography

    • 02:15 — How the Best Children's Hospitals rankings have evolved

    • 03:59 — The three-part methodology behind the rankings

    • 05:00 — How clinical outcomes differ by specialty

    • 06:09 — What the Honor Roll means

    • 07:00 — Katie explains child life and family-centered support

    • 08:57 — Where child life, social work and parent involvement fit in the scoring

    • 11:56 — How parent feedback reaches the methodology team

    • 13:34 — Should families travel for ranked care or stay closer to home?

    • 14:18 — Using regional and state rankings to find care nearby

    • 15:26 — Regional differences in access to pediatric specialty care

    • 16:22 — How different are hospitals ranked No. 15 and No. 20?

    • 17:29 — What hospitals can learn from higher-ranked programs

    • 19:23 — How children's hospital rankings differ from maternity rankings

    • 21:02 — Maternity care deserts and access to care

    • 21:58 — Do children's healthcare deserts exist?

    • 23:39 — Why outcomes, best practices and resources remain central

    • 24:47 — What parents can ask for when their child is unexpectedly hospitalized

    • 26:56 — Why growing hospital participation is encouraging

    • 28:08 — Closing thoughts

    Notable quotes

    "We really do rely on the experts who are on these working groups to help us make those decisions."

    "These are all hospitals that are providing great-quality care."

    "It's important for families who need information."

    About Inside the Children's Hospital

    Inside the Children's Hospital shares what families lived, what they learned and what they want you to know. Hosted by Katie Taylor, a certified child life specialist, the podcast helps families better understand pediatric healthcare and feel more prepared to participate in their child's care.

    Medical disclaimer: This podcast is for educational and informational purposes only and is not a substitute for individualized medical advice, diagnosis or treatment. Always speak with your child's healthcare team about questions or decisions related to their care.

    32 min
  • The NICU Waiting Game: NICU Awareness Month

    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 the different treks of healing that parents/families go through after being in the NICU, and how not all journeys follow the same path.

    Timestamps

    00:00 - Introduction to Emily

    1:39 - Meet Emily Rosen

    4:09 - Emily's Journey to Motherhood

    7:48 - The NICU Experience

    13:42 - The Emotional Toll of the NICU

    19:51 - Creating a Children's Book for NICU Families

    23:27 - The Decision to Expand the Family

    28:05 - Healing through Storytelling

    Resources Mentioned

    Emily's Book

    Emily's Instagram

    Medical information shared in this episode is not a substitute for professional medical advice. Please consult your healthcare team for guidance specific to your child and family.

    33 min
  • GalTheBabyDoc: Humor + Humanity in the NICU

    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 both ends of the spectrum, brings a unique perspective on how to properly handle sensitive topics between both parties.

    Timestamps

    00:00 - Meet Dr.Gal

    1:52 - Introduction and connection to Dr.Gal

    3:59 - The Journey to Neonatology

    6:39 - The Role of Humor in Medicine

    9:43 - Navigating Rounds: Best Practices for Parents

    12:49 - Understanding the Attending's Responsibilities

    15:56 - The Importance of Family Presence in the NICU

    20:04 - A Day in the Life of a Neonatologist

    21:22 - Personal Experiences Shaping Professional Perspectives

    24:38 - The Emotional Impact of the NICU Admissions

    26:45 - Building Trust Through Transparency

    29:47 - Humor in Medicine

    33:42 - Understanding the Father's Experience in the NICU

    Resources Mentioned

    Dr.Gal's Tiktok Account

    Dr.Gal's Instagram Account

    Medical information shared in this episode is not a substitute for professional medical advice. Please consult your healthcare team for guidance specific to your child and family.

    39 min
  • How to Talk to Kids About the Things We Wish They Didn't Have to Face [Palliative Care]

    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 palliative care supports children living with serious or complex medical conditions from the time of diagnosis, helping families manage not only medical needs, but also emotional, psychosocial, and spiritual well-being. Dr. Leigh discusses how parents can advocate for palliative care services, even if they are not offered at their local hospital, and explains why caregiver support and respite care are essential parts of caring for the whole family.

    The conversation also dives into resilience, grief, and the power of creativity. Dr. Leigh shares how writing can become a meaningful tool for processing difficult experiences, why preparing children for life's hardest moments matters, and how her books were created to help families navigate conversations surrounding illness, hospitalization, and loss with confidence and compassion.

    Whether you're navigating a new diagnosis, caring for a child with a complex medical condition, supporting a family through hospitalization, or you're a healthcare professional looking to better understand pediatric palliative care, this episode offers practical insights, encouragement, and hope.

    In This Episode, We Discuss:

    • What pediatric palliative care really means

    • The difference between palliative care and hospice

    • Why palliative care should begin at diagnosis

    • How parents can advocate for pediatric palliative care

    • Finding support when services aren't available locally

    • Caregiver burnout and the importance of respite care

    • Building resilience during a child's medical journey

    • Talking with children about illness, grief, and loss

    • Using writing and creativity as tools for healing

    • Improving access to pediatric palliative care through advocacy

    Episode Timestamps

    00:00 Meet Dr. Korie Leigh

    02:33 A career in child life and palliative care

    05:25 What is pediatric palliative care?

    08:00 How parents can advocate for support

    10:59 Insurance and access to care

    12:05 Why respite care matters

    14:18 Supporting families beyond the hospital

    15:07 Building resilience through crisis

    19:13 Writing through grief and healing

    22:26 Creativity as a coping tool

    27:29 Books, music, and final reflections

    Resources Mentioned
    • When Everything Changes: Parenting through Loss and Grief by Dr. Korie Leigh

    • Hero's Path Palliative

    • Dr. Korie Leigh's Website

    • Leigh Moody (music)

    • George Mark Children's House

    • The Artist's Way by Julia Cameron

    Medical information shared in this episode is not a substitute for professional medical advice. Please consult your healthcare team for guidance specific to your child and family.

    31 min
  • Helping Kids Cope With Needles: The Science Behind Buzzy

    In this episode of Inside the Children's Hospital Podcast, Katie Taylor sits down with Dr. Amy Baxter, pediatric emergency physician, researcher, inventor of Buzzy®, and founder of Pain Care Labs, 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 draws, IV placements, port access, and other medical procedures. Her work ultimately led to the invention of Buzzy®, a device now used by families and healthcare professionals around the world.

    Katie and Dr. Baxter discuss the science behind pain, why multiple painful procedures can have a lasting impact on children, and how connection, preparation, and developmentally appropriate support can help children build confidence instead of fear. They also share practical strategies parents can use during medical procedures, the role of child life specialists, and why helping children feel safe matters just as much as reducing physical pain.

    Whether you're preparing your child for routine vaccines, navigating frequent hospital visits, supporting a child with a chronic medical condition, or caring for pediatric patients, this episode offers compassionate, research-informed insights that can help make medical experiences less overwhelming for children and families.

    In This Episode, We Discuss:

    • Why children develop pain memories from medical procedures

    • Reducing pain during vaccines, blood draws, IVs, and port access

    • The research behind Buzzy® and vibration therapy

    • Helping children feel safe during medical procedures

    • Child life strategies that support coping and resilience

    • The importance of caregiver connection during painful procedures

    • Developmentally appropriate preparation and distraction techniques

    • Practical ways parents can advocate for pain management

    • Dr. Amy Baxter's journey from pediatric emergency physician to medical innovator

    • The future of non-medication approaches to pediatric pain management

    Episode Timestamps

    00:00 Meet Dr. Amy Baxter 02:15 Why Buzzy was created 03:40 Understanding childhood needle pain 06:00 Why multiple shots matter 10:20 Child life and helping kids feel safe 12:15 The story behind Buzzy 20:20 Using Buzzy for vaccines, IVs, and ports 24:30 Distraction that actually works 28:20 Building safety and resilience during procedures 31:40 The future of pain management research 38:10 Where families can find Buzzy 41:00 Lessons from innovation and advocacy

    Resources Mentioned
    • Pain Care Labs

    • Buzzy®

    • Buzzy Helps (Instagram)

    • Dr. Amy Baxter (LinkedIn)

    • TED Talk by Dr. Amy Baxter

    • Pain Care Labs Resources & Downloads

    • "What Works for Pain" Guide

    • "What Works for Needle Fear" Guide

    Connect with Us

    Instagram: @childlifeoncall + @insidethechildrenshospital

    Watch Today's Episode on YouTube

    Subscribe: Never miss an episode on Apple Podcasts or Spotify.

    Visit: insidethechildrenshospital.com to search stories and episodes.

    Leave a Review: It helps other families discover the podcast and access these free resources.

    Medical information shared in this episode is not a substitute for professional medical advice. Please consult your healthcare team for guidance specific to your child and family.

    YouTube Description

    How can parents make shots, blood draws, IVs, and other medical procedures less painful for their children?

    In this episode of Inside the Children's Hospital Podcast, Katie Taylor, CCLS, sits down with Dr. Amy Baxter, MD—pediatric emergency physician, researcher, founder of Pain Care Labs, and inventor of Buzzy®—to discuss the science behind pediatric pain management and how small changes can make a big difference during medical procedures.

    After realizing she couldn't prevent her own son's fear of needles, Dr. Baxter dedicated her career to understanding why children experience pain the way they do and developing evidence-based solutions to help. Her work has transformed how families and healthcare professionals approach vaccines, blood draws, IV placements, port access, and other procedures that children with medical complexity often experience.

    Together, Katie and Dr. Baxter explore why children's early medical experiences matter, how child life principles help children build resilience, and practical ways parents can help their child feel safer and more supported during healthcare visits. They also discuss the research behind vibration and cold therapy, the importance of preparation and caregiver connection, and the future of non-medication pain management.

    Whether you're preparing for routine vaccines, navigating frequent lab work, supporting a child with a chronic medical condition, or you're a child life specialist or pediatric healthcare professional, this conversation is filled with compassionate, practical insights to help children experience less pain and more confidence.

    In This Episode
    • Why childhood pain experiences matter

    • The science behind Buzzy® and pediatric pain management

    • Helping children through shots, blood draws, IVs, and port access

    • Child life strategies that reduce stress during procedures

    • Why connection with caregivers helps children cope

    • Effective distraction techniques that actually work

    • Practical ways parents can advocate for better pain management

    • Dr. Amy Baxter's journey from pediatric ER physician to inventor

    • The future of vibration therapy and pediatric pain research

    ⏱️ Timestamps

    00:00 Meet Dr. Amy Baxter 02:15 Why Buzzy was created 03:40 Understanding childhood needle pain 06:00 Why multiple shots matter 10:20 Child life and helping kids feel safe 12:15 The story behind Buzzy 20:20 Using Buzzy for vaccines, IVs, and ports 24:30 Distraction that actually works 28:20 Building safety and resilience 31:40 The future of pain management research 38:10 Where families can find Buzzy 41:00 Innovation, advocacy, and hope

    Resources Mentioned
    • Pain Care Labs

    • Buzzy®

    • Buzzy Helps (Instagram)

    • Dr. Amy Baxter on LinkedIn

    • Dr. Amy Baxter's TED Talk

    • Pain Care Labs "What Works for Pain" Guide

    • Pain Care Labs "What Works for Needle Fear" Guide

    Dr. Amy Baxter, MD, is a pediatric emergency physician, inventor, researcher, and founder of Pain Care Labs. Internationally recognized for her work in pediatric pain management, Dr. Baxter invented Buzzy® after watching her own son develop a fear of needles despite her expertise as a physician. For more than 20 years, she has researched how vibration, cold therapy, and developmentally appropriate support can reduce pain during vaccines, blood draws, IV placements, and other medical procedures. Her mission is to help children experience less pain, less trauma, and more confidence during healthcare experiences.

    ❤️ If this episode helped you, please like, subscribe, and share it with another family or healthcare professional who could benefit from these resources.

    📱 Connect with us Instagram: @childlifeoncall + @insidethechildrenshospital 🌐 Website: insidethechildrenshospital.com

    🎧 Listen on Apple Podcasts, Spotify, or wherever you get your podcasts.

    #childlife #pediatrics #medicalparent #hospitalparent #vaccines #blooddraw #IVtherapy #painmanagement #needlepain #childrenshospital #buzzy #medicaltrauma #caregiver #pediatrichealthcare #childlifespecialist #medicalcomplexity #parenting #podcast #amybaxter #paincare

    53 min
  • When You Become Your Child's Advocate Overnight

    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 of medical motherhood—from surviving the uncertainty of the diagnostic process to learning how grief and joy can exist together. She shares how finding community through the Angelman Syndrome Foundation, connecting with other parents, and embracing art as a tool for healing helped her navigate one of the most difficult seasons of her life.

    As both a mother and an art therapist, Deborah also reflects on maintaining her identity beyond caregiving, advocating fiercely for her daughter's needs, and celebrating every milestone along the way. Her story is an honest reminder that while a rare diagnosis may change the path a family expected, it can also reveal extraordinary resilience, purpose, and hope.

    Whether you're a parent navigating a rare diagnosis, caring for a child with complex medical needs, or a healthcare professional supporting families through uncertainty, this episode offers compassionate encouragement and a reminder that you are never alone.

    In This Episode, We Discuss:
    • Deborah's journey from children's hospital volunteer to art therapist
    • Maya's first year and the road to an Angelman syndrome diagnosis
    • Early signs including feeding difficulties, developmental delays, and seizures
    • The emotional experience of waiting for answers after neurological testing
    • Receiving a rare diagnosis and processing grief as a family
    • The importance of connecting with other parents and diagnosis-specific support organizations
    • How art became a source of healing and resilience
    • Balancing motherhood, career, and personal identity
    • Becoming a strong advocate for a child with complex medical needs
    • Finding joy while navigating the realities of medical parenting
    Episode Timestamps

    00:00 Meet Deborah Trejo

    01:30 Maya's first year and the journey to diagnosis

    05:30 Birth during COVID and early medical concerns

    08:00 Developmental delays, seizures, and meeting neurology

    11:25 Receiving the Angelman syndrome diagnosis

    13:00 Processing grief and surviving the unknown

    19:15 Becoming an art therapist through lived experience

    21:15 Holding onto identity beyond medical motherhood

    24:00 The Angelman Syndrome Foundation and family support

    26:50 Learning to ask for help

    28:45 Advocacy, milestones, and celebrating progress

    31:55 Maya's joy and final reflections

    Resources Mentioned
    • Angelman Syndrome Foundation
    • Angelman Syndrome Foundation (ASF) — this is the organization's official name.
    • Foundation for Angelman Syndrome Therapeutics (FAST) — another major Angelman organization, particularly focused on research and therapeutics.
    • First 100 Days Journey
    • ASF Family Champions
    • Clinical Care Toolkit
    • NIH/NINDS Angelman syndrome information

    Connect with Us

    • Instagram: @childlifeoncall + @insidethechildrenshospital

    • Youtube: @childlifeoncall
    • Subscribe: Never miss an episode on Apple Podcasts or Spotify.

    • Visit insidethechildrenshospital.com to search stories and episodes easily

    • Leave a Review: It helps other families find us and access our resources

    Medical information shared in this episode is not a substitute for professional medical advice. Please consult your healthcare team for guidance specific to your child and family.

    Keywords: Angelman syndrome, Angelman syndrome diagnosis, rare disease, rare genetic disorder, developmental delays, seizures in children, medical motherhood, caregiver support, parenting a child with disabilities, pediatric neurology, rare diagnosis, art therapy, family centered care, child life specialist, medically complex children, disability advocacy, parent support, pediatric healthcare, Inside the Children's Hospital Podcast

    33 min

About Inside the Children's Hospital

From the publisher's feed

Inside the Children's Hospital shares real stories from parents, caregivers, and pediatric healthcare professionals navigating the emotional realities of caring for a hospitalized child with honesty,…

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