Inside the Children's Hospital

Katie Taylor, Certified Child Life Specialist
  • 4.9 (160)
  • Parenting
  • Updated Weekly

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, compassion, and hope.

  1. 5h ago ·  Video

    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.

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

  2. Aug 19

    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

    Helping Kids Cope With Needles: The Science Behind Buzzy

  3. Aug 12

    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

    When You Become Your Child's Advocate Overnight

  4. Aug 5

    Doctor Visits, Diagnoses, and Difficult Conversations: A Parent's Guide to Knowing What to Say

    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 PedsDocTalk, and Chief Medical Officer at Poppins, for an honest conversation about helping families navigate some of the hardest moments in healthcare. Together, they share practical strategies for asking the right questions after a diagnosis, preparing children for medical procedures in developmentally appropriate ways, and supporting both parents and children through fear, uncertainty, and overwhelming emotions. Dr. Mona also shares her own experience as both a pediatrician and the mother of a child who experienced a neonatal stroke, offering a unique perspective from both sides of the hospital bed. Whether your child is facing a new diagnosis, an upcoming surgery, blood work, vaccinations, or ongoing medical care, this episode will leave you feeling more prepared, informed, and empowered. In This Episode: 00:00 – Why difficult medical conversations can leave parents feeling overwhelmed 2:12 – Meet Dr. Mona Amin and her work supporting families through PedsDocTalk and Poppins 5:02 – How virtual pediatric care is helping families access support sooner 6:53 – What parents should ask after receiving a new diagnosis 8:16 – Why your brain "goes offline" during difficult news 13:42 – How to pause, regulate emotions, and advocate for your child 18:31 – Should parents Google a diagnosis? How to find trustworthy information 23:15 – The importance of hope while navigating uncertainty 31:21 – How children understand illness differently at every developmental stage 35:57 – Preparing toddlers and preschoolers for medical experiences 39:38 – Supporting school-age children through needles, procedures, and fear of pain 42:38 – Why you should never use the doctor as a threat 44:00 – Preparing children for blood draws, MRIs, vaccines, and procedures 46:23 – What to do when your child is completely dysregulated during a medical procedure 52:18 – Comfort positioning, honest communication, and building trust with children 56:07 – Helping children express big feelings while remaining their safe place You'll Learn: The most important questions to ask after a new diagnosis How to stay grounded when emotions take over Developmentally appropriate ways to explain illness to children How to prepare kids for medical procedures without increasing anxiety Why honest language builds trust with children How to respond when your child is scared or dysregulated Why connection matters more than perfection Ways to help children develop confidence during medical experiences Resources Mentioned PedsDocTalk by Dr. Mona Amin Poppins Pediatric Care (Use code ChildLifeOnCall for one month of FREE parent coaching or pediatric medical care where available.) Free Comfort Position Guide from Child Life On Call     Connect with Us Instagram: @childlifeoncall + @insidethechildrenshospital YouTube- All episodes available in video format!  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 care team for guidance specific to your child and family. Keywords: child medical diagnosis, pediatric diagnosis, child life specialist, Dr. Mona Amin, PedsDocTalk, preparing kids for medical procedures, talking to kids about illness, helping children cope with illness, questions to ask after a diagnosis, child receives a diagnosis, pediatrician advice, preparing kids for blood draws, preparing kids for vaccines, hospital anxiety in children, pediatric healthcare, family-centered care, medical parenting, supporting children through healthcare, pediatric patient education, parenting a medically complex child

  5. Jul 29

    Prader-Willi Syndrome: Why Caregiving Moms Need Community and Support

    When your child receives a diagnosis, everything changes. In this heartfelt episode, Katie Taylor welcomes back Jessica Patay, founder of We Are Brave Together, to discuss the emotional realities of caregiving, raising a son with Prader-Willi syndrome and autism, and why supporting the mental health of caregiving moms is essential. Jessica shares how a mentor mom transformed her own journey after her son's diagnosis and how that experience inspired her to create We Are Brave Together, a thriving community supporting thousands of caregiving mothers worldwide. She also introduces her newest book, Suddenly Brave Together, a collection of letters written by experienced caregiving moms to families navigating a new diagnosis. Together, Katie and Jessica explore the importance of community, finding hope through shared experiences, navigating the transition into adult healthcare, and why caregivers deserve just as much support as the children they care for. Whether you're parenting a child with a rare disease, disability, medical complexity, neurodivergence, or chronic illness, this conversation is a reminder that you never have to walk this journey alone. In This Episode: 1:58 – Meet Jessica Patay and her family's journey with Prader-Willi syndrome 5:45 – What is We Are Brave Together? 8:10 – Jessica's new book, Suddenly Brave Together 11:05 – The letter Jessica wrote to newly diagnosed moms 13:10 – Why caregiver mental health matters 15:55 – The mentor mom who changed everything 17:15 – How moms can become Connection Circle leaders 21:30 – Supporting moms navigating behavioral challenges 23:15 – Where to find Jessica's books and resources 24:15 – Transitioning from pediatric to adult healthcare 27:45 – Why caregivers still need a village after childhood 30:45 – Creating spaces where caregivers feel seen, not judged 32:45 – Why supporting moms strengthens the entire family Resources Mentioned • We Are Brave Together: https://www.wearebravetogether.org • Learn about Connection Circles and caregiver retreats • Suddenly Brave Together and Becoming Brave Together Connect with Us Instagram: @childlifeoncall + @insidethechildrenshospital 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 care team for guidance specific to your child and family. Keywords:  *]:pointer-events-auto R6Vx5W_threadScrollVars scroll-mb-[calc(var(--scroll-root-safe-area-inset-bottom,0px)+var(--thread-response-height))] scroll-mt-[calc(var(--header-height)+min(200px,max(70px,20svh)))]" dir="auto" data-turn-id= "request-6a5fe19e-5ae8-83ea-b880-f45b98367efe-1" data-turn-id-container= "request-6a5fe19e-5ae8-83ea-b880-f45b98367efe-1" data-testid= "conversation-turn-8" data-turn="assistant"> Prader-Willi syndrome, We Are Brave Together, caregiver mental health, caregiving moms, special needs parenting, medically complex children, rare disease parenting, autism parenting, caregiver support, parent support community, new diagnosis support, disability parenting, family caregiving, pediatric to adult healthcare transition, Connection Circles, caregiver burnout, parenting after diagnosis, medically complex parenting, Jessica Patay, caregiving community

  6. Jul 22

    How Child Life Specialists Help Children Thrive During Hospital Stays

    What does it take to help children thrive during a hospital stay? In this episode of Inside the Children's Hospital Podcast, Katie Taylor sits down with Alyssa Sachs, CCLS, an inpatient Child Life Specialist at Boston Children's Hospital, to explore how Child Life Specialists help children and families experience joy, connection, and normalcy—even during long and complex hospital stays. Alyssa shares what it's like supporting children on the inpatient neuroscience floor, where patients range from newborns to young adults with epilepsy, neuro-oncology diagnoses, neurosurgical needs, and more. She offers an inside look at the innovative programs that make Boston Children's unique, including gaming and technology specialists, hospital clowns, music therapy, artists-in-residence, facility dogs, and therapeutic events that transform the hospital experience. Throughout the conversation, Alyssa reminds us that it's often the smallest moments, like a surprise snow cone, a movie night on the rooftop, or decorating a hospital room, that leave the biggest impact on children and caregivers alike. Whether you're a parent navigating a hospitalization, a healthcare professional, or simply curious about how Child Life Specialists support patients in pediatric hospitals, this episode is a heartfelt reminder that childhood doesn't have to stop because of illness. In This Episode, We Discuss: What an inpatient Child Life Specialist does Supporting children with neurological and neurosurgical conditions How Child Life Specialists normalize the hospital experience Gaming and technology specialists and therapeutic gaming Hospital clowns, music therapy, artists, and facility dogs Why playrooms matter for patients and siblings Creative ways families can bring "home" into the hospital Supporting caregivers through joyful moments Collaboration between Child Life and the medical team The importance of community partnerships and hospital donors Episode Timestamps 00:00 Meet Alyssa Sachs, CCLS at Boston Children's Hospital 01:04 Why Alyssa became a Child Life Specialist 01:49 Caring for patients on the neuroscience floor 03:55 Programs that make the hospital feel like childhood 07:14 Inside the Gaming & Technology Specialist program 09:33 Bringing the outside world into the hospital 11:21 Why joyful moments matter for caregivers too 12:55 Supporting families through difficult hospital experiences 15:56 Simple ways families can create normalcy in any hospital room 18:51 How Child Life collaborates with nurses and physicians 20:55 Joy carts, lemonade stands, and surprise snow cones 23:08 Why hospital playrooms are so important 25:09 The role of hospital clowns in pediatric care 27:06 Why normalization is essential to healing 27:56 Community partnerships that make it all possible   Resources Mentioned Boston Children's Hospital Child Life Services Hospital Playrooms Gaming & Technology Specialists Music Therapy Artists-in-Residence Hospital Clowns Facility Dog & Paw Prints Programs Connect with Us Instagram: @childlifeoncall + @insidethechildrenshospital 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 care team for guidance specific to your child and family. Keywords: child life specialist, pediatric neurology, neuro child life, pediatric epilepsy, seizures in children, MRI preparation, EEG preparation, pediatric neurosurgery, medical play, hospital coping skills, pediatric healthcare, family centered care, neurological conditions, brain disorders, hospital anxiety, medical anxiety, coping skills for kids, medically complex children, parent support, children's hospital, child life, epilepsy support, pediatric podcast, Inside the Children's Hospital Podcast, Alyssa Sachs

  7. Jul 15

    ADNP Syndrome: A Child Life Specialist's Journey to Diagnosis, Advocacy & Hope

    When Caitlin noticed that her daughter, Kennedy, wasn't meeting developmental milestones, she trusted her instincts—even when others reassured her that everything was fine. As both a former Child Life Specialist and mom of a child with ADNP syndrome, Caitlin shares her family's journey from early concerns and endless appointments to receiving a diagnosis for a condition so rare that only about 500 cases have been identified worldwide. In this conversation, Caitlin opens up about navigating uncertainty, advocating for her daughter in healthcare settings, finding support through rare disease communities, and balancing the joy and grief that often coexist when parenting a child with complex medical needs. Whether you're a parent searching for answers, raising a child with a diagnosis, or supporting families through difficult seasons, Caitlin's story is filled with practical wisdom, encouragement, and hope. In this episode, you'll learn: • How to trust your instincts when something feels different about your child's development • What it was like receiving a rare disease diagnosis • Why finding the right medical providers matters • How parents can confidently advocate for their children during medical procedures • The importance of community for rare disease families • How Caitlin and her husband navigate the emotional challenges of parenting together • Why joy and grief can exist at the same time Timestamps: 00:00 – Introduction 00:41 – Meet Caitlin 02:48 – Early developmental concerns 05:27 – The search for answers 07:24 – Receiving an ADNP syndrome diagnosis 10:05 – What is ADNP syndrome? 11:10 – Coping with the diagnosis 12:50 – Supporting your marriage through caregiving 14:50 – Advocating for your child in healthcare 15:27 – Preparing for medical procedures 17:52 – Parents are part of the care team 21:07 – Family planning after a rare diagnosis 24:09 – Welcoming a second child 27:16 – Joy and grief can coexist 29:20 – Caitlin's favorite part of being Kennedy's mom 30:59 – Resources for rare disease families 32:52 – Different Together Co. 34:35 – Hope, resilience, and final advice   Resources Mentioned: • National Organization for Rare Disorders (NORD): https://rarediseases.org • Different Together Co. (Caitlin's Instagram) Connect with Us Instagram: @childlifeoncall + @insidethechildrenshospital 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 care team for guidance specific to your child and family.   Keywords: ADNP syndrome, ADNP Syndrome diagnosis, rare disease, rare genetic disorder, rare disease awareness, developmental delays, child development, developmental milestones, autism, autism spectrum disorder, hypotonia, genetic testing, pediatric neurology, medical parenting, parenting a medically complex child, special needs parenting, child life specialist, child life, patient advocacy, parent advocacy, healthcare advocacy, medical procedures, hospital coping, pediatric healthcare, VCUG, medical trauma, parenting after diagnosis, genetic counseling, early intervention, physical therapy, rare disease community, disability inclusion, family support, caregiver support, chronic illness parenting, special needs family, navigating a rare diagnosis, trusting your instincts, medical journey, pediatric diagnosis

  8. Jul 8

    Growing Up with Chronic Intestinal Pseudo-Obstruction

    For many families navigating chronic illness, it's hard to imagine what the future might look like for their child. This week on Inside the Children's Hospital, Katie Taylor sits down with Vincent Rosche, a patient advocate, fitness enthusiast, and survivor who has spent most of his life navigating complex medical challenges. Diagnosed with chronic intestinal pseudo-obstruction (CIPO) at just 9 months old, Vincent grew up with feeding tubes, central lines, frequent hospitalizations, and even battled thyroid cancer as a teenager. Today, Vincent works as the Community Engagement Coordinator for the Oley Foundation, connecting patients and families receiving home nutrition support with resources, education, and peer support. In this inspiring conversation, Vincent shares: • His earliest memories of growing up in the hospital • The profound impact Child Life Specialists and therapy dogs had on his experience • What his parents did that made the biggest difference during difficult times • Navigating school while managing complex medical needs • Learning to advocate for himself as a patient • How fitness transformed his health and confidence • Becoming a bodybuilding competitor despite lifelong health challenges • The importance of community, connection, and peer support • Resources available through the Oley Foundation for pediatric and adult patients ⏰ Timestamps 00:00 Introduction 00:50 Vincent's diagnosis and medical journey 02:52 Life today: advocacy, fitness, and dogs 04:02 Therapy dogs and Child Life memories 05:43 Earliest hospital experiences 07:14 The role of family and support 10:21 Advice for parents navigating chronic illness 17:34 School and growing up medically complex 23:24 Learning self-advocacy 28:20 Discovering fitness 32:59 Becoming a personal trainer 36:15 Competitive bodybuilding 37:59 Joining the Oley Foundation 40:23 Peer support and patient advocacy 45:12 Resources for families 49:49 How to connect with Vincent 51:05 Lessons learned and proudest accomplishments 58:47 A message of hope for parents 01:00:00 Closing Vincent offers a powerful message to parents who are in the thick of it right now: you're doing better than you think, and your child remembers your love more than your mistakes. Whether you're a parent, caregiver, healthcare professional, or someone living with a chronic condition, this conversation is filled with hope, perspective, and practical wisdom. Learn more about the Oley Foundation at https://oley.org Connect with Vincent: Instagram: @chronically_fit_life Facebook: Vincent Rosche Connect with us! Instagram: @childlifeoncall + @insidethechildrenshospital 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 care team for guidance specific to your child and family. Keywords:  Chronic Illness, Rare Disease, Patient Advocacy, Medical Parenting, Pediatric Healthcare, Feeding Tube, TPN, Chronic Intestinal Pseudo-Obstruction, Child Life Specialist, Resilience

See All (326)

4.9
out of 5
160 Ratings

About

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, compassion, and hope.

Information

  • Creator
    Katie Taylor, Certified Child Life Specialist
  • Years Active
    2017 - 2026
  • Episodes
    326
  • Rating
    Clean
  • Copyright
    © 2026 Child Life On Call®
  • Show Website
    Inside the Children's Hospital

You Might Also Like