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Inside the Children's Hospital

Katie Taylor, Certified Child Life Specialist

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.

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Yesterday · 38 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.
#318
August 26 · 30 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.
#317
August 19 · 52 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
August 12 · 32 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
August 5 · 58 min
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
July 29 · 33 min
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
July 22 · 29 min
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
#313
July 15 · 39 min
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
#311
July 8 · 1 hr 3 min
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
#310
July 1 · 34 min
Supporting Children Through Burn Injuries
Has your child been burned? Whether it was hot water, ramen noodles, a stove, fireworks, or another accident, this episode guides parents through what to do next. In this episode, Katie sits down with Christella Almonacy, Certified Child Life Specialist at Wellstar's Burn Program, to discuss what families can expect after a child experiences a burn injury. Together, they explore the physical and emotional recovery process, how Child Life Specialists help children cope with painful procedures, and why giving kids choices can make all the difference. Christella also shares common causes of pediatric burns, practical prevention tips, and resources that help children and siblings navigate life after a burn injury. Whether you're a parent, caregiver, or pediatric healthcare professional, this episode offers reassurance, education, and hope. Key Takeaways Burn injuries happen more often than families realize—and accidents can happen to anyone. Parents often experience intense guilt after a child's burn injury, but they aren't alone. Child Life Specialists prepare children for procedures, reduce fear, and build coping skills. Giving children choices helps them regain a sense of control during medical care. Burn recovery includes emotional healing, not just physical healing. Siblings may also need support after witnessing a traumatic injury. Burn prevention starts with awareness of everyday household risks. Timestamps 2:59 Christella's path to Child Life 3:30 Supporting families after a burn injury 5:58 What children experience after a serious burn 7:28 Preparing kids for procedures and surgery 9:15 Giving children choices during treatment 12:30 What to expect in a burn clinic 17:10 Meet the burn care team 18:50 Burn prevention tips every family should know 22:08 The burn recovery journey 25:50 Returning to school after a burn 27:15 Supporting siblings through trauma 29:20 A powerful patient story Resources Mentioned Phoenix Society for Burn Survivors Sarah Steps by the Phoenix Society for Young Children 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 Keywords Pediatric burns, burn prevention, child life specialist, burn recovery, pediatric burn care, burn clinic, childhood injuries, coping with hospitalization, emotional recovery after burns, parenting after a burn injury. 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.
#309
June 24 · 32 min
What a NICU Nurse Wants Parents to Know
What is it really like to have a baby in the NICU? Katie Taylor sits down with NICU nurse, educator, and content creator Alyssa Saldivar (@alyssathenurse) to discuss how families can find confidence, connection, and support during one of the most challenging experiences of parenthood. Alyssa shares her journey of becoming a nurse during the COVID-19 pandemic, her passion for supporting both families and fellow nurses, and the practical ways parents can become active participants in their baby's care. Together, Katie and Alyssa explore everything from skin-to-skin care and developmental support to advocacy, bonding, and life after NICU discharge. Whether you're currently navigating a NICU stay, preparing for a high-risk delivery, or reflecting on a NICU experience from years ago, this conversation offers encouragement, validation, and actionable guidance. In This Episode, We Discuss: Becoming a NICU nurse during an unprecedented time in healthcare Supporting parents through the emotional realities of the NICU Why skin-to-skin care is so powerful for premature babies Helping families feel confident and involved in their baby's care How parents can advocate for themselves and their baby Pain management and comfort strategies in the NICU Developmentally appropriate ways to soothe premature infants Supporting parents who cannot be at the bedside every day Navigating bonding challenges and NICU trauma Resources available to support families during hospitalization The transition from NICU to home Timestamps 00:00 Meet Alyssa Saldivar and her journey into NICU nursing 02:15 Starting a nursing career during the COVID-19 pandemic 03:40 Building confidence as a NICU nurse and educator 05:30 How becoming a parent changed Alyssa's approach to family-centered care 06:20 Caring for extremely premature babies and empowering parents 06:50 The importance of skin-to-skin care in the NICU 07:45 Why first diaper changes matter for parent confidence 08:30 Supporting parents who can't be at the bedside every day 09:20 Scent cloths, breast milk, and maintaining connection 10:10 Creating a family-centered environment in the NICU 11:20 How parents can advocate for their baby's needs 13:15 Parent involvement during painful procedures and treatments 15:15 Helping babies recover and regulate after procedures 16:00 Developmentally appropriate ways to comfort premature babies 18:00 Alyssa's mission to support NICU families beyond the bedside 20:00 Processing NICU experiences years after discharge 21:00 Supporting NICU dads during moments of uncertainty 22:10 When bonding doesn't happen immediately 24:15 Child life specialists, social workers, chaplains, and other support resources 25:15 Filling the gap between NICU discharge and follow-up care 26:30 What Alyssa hopes families take away from her content 27:45 Final encouragement for NICU families Connect with Alyssa Instagram: @alysthenurse TikTok: @alysthenurse 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: NICU Nurse, Neonatology, Family Centered Care, NICU Support
June 17 · 40 min
Recognizing Infantile Spasms: Navigating a Diagnosis as a Nurse Practitioner
What happens when a pediatric nurse practitioner suddenly finds herself on the other side of diagnosis? On this week's episode of Inside the Children's Hospital, Katie Taylor sits down with Laura Forcella, a developmental pediatric nurse practitioner and mom to a son with Dup15q syndrome and epilepsy. Laura shares the deeply personal journey of recognizing her son's infantile spasms, navigating a rare disease diagnosis, and balancing life as both a medical professional and a caregiver. Laura opens up about the unique challenges of being a "med mom," the emotional shift from provider to parent, and how her experiences have transformed the way she supports families in her own clinical practice. Together, Katie and Laura discuss the power of parental intuition, the importance of early intervention, building a village of support, and finding moments of joy amidst the complexities of caregiving. Whether you're a parent navigating a diagnosis, a healthcare professional supporting families, or someone looking for encouragement on a difficult journey, this conversation is filled with compassion, wisdom, and hope. In This Episode, You'll Learn: Laura's path from pediatric ICU and ER nurse to developmental pediatric nurse practitioner How she recognized the early signs of infantile spasms in her son The diagnostic journey that led to a Dup15q syndrome diagnosis What it's like to care for patients while navigating your own child's medical complexities Why videos can be critical when seeking answers for concerning symptoms The importance of trusting your instincts as a parent How early intervention services can help while waiting for specialist appointments The realities of balancing advocacy, caregiving, work, and self-care Finding community through rare disease organizations and social media How a child's diagnosis can shape and strengthen a parent's identity Resources Mentioned: Dup15q Alliance Early Intervention Programs (available in every U.S. state) Connect with Laura: Developmental Med Mom on Instagram (@developmentalmedmom) 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: Infantile Spasms, Dupq15, Nurse Practitioner, Developmental Pediatrics, Seizures, Child Life Specialist, Support
June 10 · 32 min
What Happens When Your Child Needs an Ambulance, Helicopter, or Medical Transport?
When a child needs emergency transport to a children's hospital, families are often facing one of the hardest moments of their lives. Behind every ambulance ride, helicopter flight, or plane transfer is a highly trained team working together to keep children safe, while also supporting parents through the unknown. In this episode of Inside the Children's Hospital, Katie Taylor sits down with Kami Stone, Assistant Clinical Director at Texas Children's Hospital Austin, and Jacob, a transport EMT with the Texas Children's Kangaroo Crew, to talk about what pediatric transport really looks like behind the scenes. Together, they share: What happens when a pediatric transport team arrives The roles of EMTs, nurses, respiratory therapists, and physicians during transport How transport teams prepare for weather, traffic, logistics, and emergencies Why Texas Children's prioritizes family-centered care during transport What parents can expect during ambulance, helicopter, and plane transports How simulation training prepares teams for high-stress situations The emotional realities of caring for critically ill children and supporting families in crisis Why is asking questions during transport always encouraged The small moments of human connection that families never forget Jacob also shares his personal story of being treated at Texas Children's as a child after being diagnosed with Type 1 diabetes — and how that experience inspired him to dedicate his career to pediatric transport care. This conversation offers a rare look into the people and systems families depend on during medical emergencies, while reminding parents that they are never alone during the journey. About Our Guests Kami Stone, MSN, RN, NE-BC Kami Stone is the Assistant Clinical Director overseeing the Emergency Center, trauma program, and transport team at Texas Children's Hospital in Austin, Texas. With a background in emergency nursing and healthcare leadership, Kami is passionate about building systems that improve both patient outcomes and family experiences during transport care. Jacob Willets Martinez, EMT Jacob is a pediatric transport EMT with the Texas Children's Kangaroo Crew. After receiving care at Texas Children's as a teenager following his Type 1 diabetes diagnosis, he knew he wanted to one day work for the organization that supported his family during such a difficult time. Resources & Links Learn more about Texas Children's Austin: https://www.texaschildrens.org/austin Learn more about Inside the Children's Hospital: https://insidethechildrenshospital.com Connect with Child Life On Call Instagram: @insidethechildrenshospital and @childlifeoncall If this episode encouraged you, please subscribe, leave a review, and share it with another parent or healthcare professional who may benefit from hearing these stories.
#306
June 3 · 39 min
When the Hospital Stay Ends: Understanding Pediatric Medical Traumatic Stress
For many families, going home from the hospital feels like the finish line. But what happens when the emotional impact of a medical experience lingers long after discharge? On this episode of Inside the Children's Hospital, Katie Taylor sits down with Jen Aspengren, founder of Alongside Network, to discuss pediatric medical traumatic stress (PMTS), a common yet often overlooked experience that affects children, parents, siblings, and caregivers following serious medical events. Jen shares her family's journey after her infant son underwent life-saving airway surgery at just seven months old. While his physical recovery went well, the emotional effects lasted for years, leading Jen to discover a significant gap in support for families navigating life after hospitalization. Together, Katie and Jen explore: Jen's son's diagnosis of congenital subglottic stenosis and emergency airway surgery The unexpected emotional toll that followed after returning home What pediatric medical traumatic stress (PMTS) is and how it affects the entire family Common signs of traumatic stress in children, parents, and caregivers Why many families feel isolated after discharge despite receiving excellent medical care The importance of validation, community, and coping skills during recovery How small moments of connection from healthcare providers can build trust and resilience The impact of emotional support on long-term health outcomes and medical adherence How Alongside Network is helping families and healthcare providers better navigate medical trauma Jen also shares practical insights for healthcare professionals, highlighting how simple actions—such as a follow-up phone call or a few moments of acknowledgment—can make a lasting difference for families facing difficult diagnoses and hospitalizations. This conversation is a powerful reminder that healing doesn't end when a child leaves the hospital. Supporting the emotional well-being of children, parents, and caregivers is an essential part of recovery. About Our Guest Jen Aspengren Jen Aspengren is the founder of Alongside Network, a nonprofit organization dedicated to helping families and healthcare providers address pediatric medical traumatic stress. Prior to founding Alongside, Jen spent over 20 years working in systems-change initiatives and supporting social entrepreneurs around the world. Today, she combines her professional expertise with her lived experience as a healthcare parent to improve support systems for families navigating medical challenges. About Alongside Network Alongside Network works to ensure that families affected by pediatric illness, injury, and hospitalization have access to the emotional support they need during and after medical experiences. One of their core offerings is a free six-week virtual well-being program for parents and caregivers based on the evidence-based Take a Breath curriculum developed at the Royal Children's Hospital in Melbourne, Australia. The program focuses on: Validation of family experiences Building supportive community connections Developing coping and resilience skills Resources & Links Learn more about Alongside Network: https://www.alongsidenetwork.org 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. Pediatric Medical Traumatic Stress, Medical Trauma, Medical Parenting, Child Life Specialist, Family-Centered Care, Pediatric Mental Health, Caregiver Support, Pediatric Hospitalization, Trauma-Informed Care, Family Resilience
#306
May 27 · 40 min
From Pharmacist to Mom: Navigating Type 1 Diabetes and Celiac Disease
What happens when the healthcare professional becomes the parent sitting on the other side of the diagnosis? In this episode, Katie Taylor sits down with Melissa Apa—a clinical pharmacist, diabetes educator, and mom—to share her family's journey navigating both celiac disease and type 1 diabetes with her young son. Melissa opens up about the emotional overwhelm of receiving life-changing diagnoses, even with years of medical expertise behind her, and how her family learned to adapt, advocate, and find stability in the chaos. From replacing every pot and pan in her kitchen overnight to teaching her six-year-old how to manage his insulin pump, Melissa shares the realities of parenting a child with chronic illness while balancing work, marriage, caregiving, and the emotional toll of always being "on." Together, Katie and Melissa explore the invisible mental load medical parents carry, the importance of empowering kids to advocate for themselves, and why support systems matter just as much as medical education. This conversation is honest, practical, and deeply hopeful for any parent navigating a chronic diagnosis with their child. What You'll Hear in This Episode: The unexpected appointment that changed everything with a celiac diagnosis Why Melissa says her entire career prepared her to care for her son The emotional impact of becoming both a healthcare provider and a medical mom How type 1 diabetes and celiac disease are often connected The pressure parents feel around "good" and "bad" numbers in diabetes care Why medical parents need systems, routines, and "go bags" to survive daily life Teaching children to advocate for themselves in school and healthcare settings The realities of never fully stepping away from caregiving responsibilities How Melissa and her husband creatively protect their relationship and mental health Why diabetes management can become more manageable with support and practice Key Takeaways: Chronic illness management is emotional—not just medical Blood sugar numbers are data, not moral judgments Kids are capable of learning and advocating for themselves earlier than we think Systems and routines can reduce overwhelm for families Caregivers deserve support, too The beginning of a diagnosis journey is often the hardest part—but it won't always feel this overwhelming About Our Guest: Melissa Apa is a clinical pharmacist, diabetes educator, podcast host, and mom of two from Buffalo, New York. After diagnosing her son with type 1 diabetes and navigating celiac disease as a family, Melissa shifted her focus toward helping families manage chronic illness with more confidence, support, and sustainable systems. Through coaching, education, and advocacy, she helps parents move from survival mode to feeling empowered in everyday life. Resources & Links: Connect with Melissa on Instagram: @melissaapa_ Listen to her podcast: Insulin Inspired Learn more about Melissa's coaching and resources on her website Connect with Us Subscribe: Never miss an episode on Apple Podcasts or Spotify. Visit insidethechildrenshospital.com to search stories and episodes easily Follow us on Instagram for updates and opportunities to connect with other parents Download SupportSpot: receive Child Life tools at your fingertips. 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: type 1 diabetes, celiac disease, parenting a child with diabetes, diabetes mom, medical parenting, chronic illness parenting, pediatric diabetes, celiac diagnosis, type 1 diabetes support, caregiver mental health, diabetes advocacy, medical mom podcast, child chronic illness support, parenting through diagnosis
#304
May 20 · 49 min
A NICU Dad Story: Life After a 25 Week Premature Birth
"I kept telling her, 'We've got this.' And inside, I had no clue what was coming next." What does it look like to be "the strong one" when your world is falling apart? In this episode, Katie Taylor sits down with Jared Muscat—dad, surfer, and self-proclaimed "dad-vocate"—to share his family's unexpected journey into the NICU after a high-risk pregnancy. From a routine 20-week appointment to welcoming his son Ollie at just 25 weeks, Jared opens up about fear, resilience, and what it means to show up as a partner and father in crisis. He shares the emotional weight of protecting his family while processing his own grief, the importance of finding support, and how small rituals—like late-night NICU visits and lullabies—helped him bond with his son. This is an honest, heartfelt conversation about fatherhood, vulnerability, and the strength it takes to keep going when nothing feels certain. What You'll Hear in This Episode: The moment everything changed during a routine pregnancy appointment Navigating uncertainty, fear, and decision-making as a dad and partner The emotional experience of becoming a NICU parent overnight How Jared balanced supporting his wife, caring for his older son, and coping himself The power of routines, community, and finding other dads who understand What bonding looks like in the NICU—and the moment it finally clicked Life after the NICU and adjusting to a new normal at home Key Takeaways: Dads experience deep emotional strain in the NICU—often quietly You don't have to carry everything alone—finding support is essential Small, consistent rituals can create stability in chaos Bonding doesn't always happen immediately—and that's okay The NICU feels endless, but it won't last forever About Our Guest: Jared Muscat is a father of two, a marketing agency owner, and a passionate advocate for NICU dads. Through his own experience, he now supports other families navigating complex medical journeys. Resources to Support NICU Families The NICU Dad Listen to Alex's Story here. March of Dimes Hand to Hold Connect with Jared Instagram Website Connect with Us Subscribe: Never miss an episode on Apple Podcasts or Spotify. Visit insidethechildrenshospital.com to search stories and episodes easily Follow us on Instagram for updates and opportunities to connect with other parents Download SupportSpot: receive Child Life tools at your fingertips. Leave a Review: It helps other families find us and access our resources! Medical information provided is not a substitute for professional advice—please consult your care team. *]:pointer-events-auto R6Vx5W_threadScrollVars scroll-mb-[calc(var(--scroll-root-safe-area-inset-bottom,0px)+var(--thread-response-height))] scroll-mt-(--header-height)" dir="auto" data-turn-id="f5a69813-ba58-421b-bb6d-4a6cc2a82a14" data-turn-id-container="f5a69813-ba58-421b-bb6d-4a6cc2a82a14" data-testid="conversation-turn-3" data-scroll-anchor="false" data-turn="user"> *]: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-WEB:03c19e2e-817b-42ba-b42b-4c476b05221e-3" data-turn-id-container= "request-WEB:03c19e2e-817b-42ba-b42b-4c476b05221e-3" data-testid= "conversation-turn-4" data-scroll-anchor="false" data-turn= "assistant"> Keywords: NICU dad, NICU father support, NICU dad mental health, premature baby dad, NICU parenting for dads, NICU dad podcast, NICU journey dad, father of preemie, NICU support for fathers, dad in the NICU
#303
May 13 · 51 min
Tay-Sachs Disease: A Father's Story of Diagnosis, Parenting, and Purpose
In this episode of Inside the Children's Hospital, Katie Taylor sits down with Dr. Matt Goldstein—physician, biotech leader, and father—who shares the story of his daughter, Havi, and her diagnosis with Tay-Sachs disease. Despite both parents undergoing genetic screening before starting their family, a testing error led to a missed diagnosis. Javi appeared to develop typically at first, but over time, subtle changes led to a life-altering realization: she had a rare, fatal neurodegenerative condition. As a physician, Matt was trained to solve problems. As a parent, he was driven to protect his child. But in the face of a disease with no cure, he and his wife had to redefine what "doing everything" truly meant. From navigating complex medical decisions to choosing presence over intervention, Matt shares how their family embraced a different path—one centered on love, connection, and living fully in the time they had. This conversation is a powerful reflection on grief, meaning, and the transformative impact of parenthood. You'll hear: What it was like to receive a Tay-Sachs diagnosis after reassuring genetic testing How a medical error changed the course of their family's life The emotional tension between medical training and parental instinct What it means to "do everything" in a non-medical way How Havi communicated joy, preferences, and personality without words The role of community and parent-to-parent connection during grief How the family created meaningful traditions, including weekly "Shabirthdays" The impact of loss on identity, purpose, and career direction What You'll Learn in This Episode: What Tay-Sachs disease is and how it affects the body The limitations—and importance—of genetic screening Why preventive genetics is one of the most powerful tools in modern medicine How families can approach decision-making when facing life-limiting diagnoses The importance of redefining quality of life beyond clinical outcomes How grief and love can coexist—and shape the way we live Resources Mentioned E-motion-Non-profit organization created by Myra that supports bereaved mothers JScreen (Genetic Testing & Education) 57 Fridays (memoir by Myra Sack) Emory University's JScreen Program National Tay-Sachs & Allied Diseases Association (NTSAD) Connect with Us Subscribe: Never miss an episode on Apple Podcasts or Spotify. Visit insidethechildrenshospital.com to search stories and episodes easily Follow us on Instagram for updates and opportunities to connect with other parents Download SupportSpot: receive Child Life tools at your fingertips. Leave a Review: It helps other families find us and access our resources! Medical information provided is not a substitute for professional advice—please consult your care team. Keywords: *]:pointer-events-auto R6Vx5W_threadScrollVars scroll-mb-[calc(var(--scroll-root-safe-area-inset-bottom,0px)+var(--thread-response-height))] scroll-mt-(--header-height)" dir="auto" data-turn-id="4739745b-1892-42c2-94c3-50a772e3ff1b" data-testid="conversation-turn-3" data-scroll-anchor="false" data-turn="user"> *]:pointer-events-auto [content-visibility:auto] supports-[content-visibility:auto]:[contain-intrinsic-size:auto_100lvh] 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-WEB:969cb4ab-59dd-4854-b718-920a4b83a8e3-1" data-testid= "conversation-turn-4" data-scroll-anchor="false" data-turn= "assistant"> Tay-Sachs disease, Tay-Sachs awareness, rare disease podcast, pediatric rare disease, genetic disorder, infant Tay-Sachs, neurodegenerative disease, parenting a medically complex child, caregiver support, special needs parenting, navigating rare disease, pediatric neurology, genetic testing, childhood illness, family medical journey, emotional support for families, healthcare podcast, Child Life On Call Podcast, family resilience, living with Tay-Sachs
May 7 · 56 min
Why Hospital Continuity and Staff Support Are Critical: Parents Speak Out
Supporting Families in Pediatric Healthcare: Insights from Parent Caregivers In this episode, we explore the experiences of parent caregivers navigating their child's complex health journeys, emphasizing the importance of advocacy, sharing stories, and hospital-family collaboration. Join us as these incredible parents discuss how they advocate for their children, the role of social media in building community, and what hospital leadership can do to improve family-centered care.Key topics covered: Why parents start sharing their child's medical journey online and the impact of community support The evolving nature of sharing sensitive health information as children grow How hospital staff and leadership can support effective communication and continuity of care The importance of family system support and staff retention for a positive hospital experience Personal reflections on speaking up at the bedside and overcoming advocacy barriers Resources and advocacy initiatives led by parent caregivers, including support groups and educational tools Timestamps: 00:46 - Introduction to the episode and guest caregivers' perspectives 01:47 - The role of social media in sharing real-time hospital experiences 05:56 - Reasons behind sharing stories online and the community that forms 09:15 - How sharing supports advocacy and awareness efforts 13:08 - Balancing transparency and privacy when sharing health updates 15:15 - Evolving sharing practices as children grow older 18:57 - Privacy considerations for children with medical needs 21:42 - What hospital staff and leadership can do to improve family experiences 24:22 - The importance of continuity of care and staff retention 28:43 - Overcoming barriers to speaking up at the bedside 33:08 - Building trust and advocacy in healthcare teams 38:32 - Supporting parental mental health and caregiver well-being 44:03 - Strategies for effective parent-physician communication 49:38 - Parent-led initiatives and resources to empower families 51:45 - Current projects and ways to connect with the speakers 55:12 - Closing remarks and gratitudeResources & Links: Child Life On Call Inside the Children's Hospital Podcast Brave Bears Co Medical Moms of NICU iROC Research Studies MedicalMom Tips & Resources Connect with the Guests: Lyndsey Fedorko - LinkedIn | Instagram Kate Kostolansky - LinkedIn Tanisha Wormley - LinkedIn Follow Katie Taylor for more insights This episode highlights how sharing personal journeys fosters community, advocacy, and system improvements—empowering families to be active participants in healthcare. Instagram.com/childlifeoncall The Inside the Children's Hospital 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.
#302
May 6 · 59 min
Trisomy 13: Challenging the Narrative and Choosing Hope
What happens when a diagnosis labeled "lethal" doesn't tell the full story? In this episode of Inside the Children's Hospital, Katie Taylor sits down with Nicole, a mom of five, who shares her daughter Charlotte's journey with Trisomy 13—a diagnosis often associated with limited survival and quality of life. After receiving devastating news over the phone while at work, Nicole and her husband were told their daughter likely wouldn't survive. But instead of accepting that narrative, they sought out information, second opinions, and a care team willing to partner with them. From navigating medical bias and a complicated NICU stay to bringing Charlotte home without nursing support, Nicole shares what it really looks like to parent a medically complex child—and the joy that exists alongside the challenges. This conversation highlights the importance of advocacy, informed decision-making, and viewing each child as an individual—not just a diagnosis. You'll hear: What it was like to receive a Trisomy 13 diagnosis unexpectedly and over the phone How Nicole and her husband navigated conflicting medical opinions and bias The critical role of second opinions and finding the right care team What life looks like caring for a child with a trach, ventilator, and G-tube How siblings adjusted and built meaningful relationships with Charlotte The reality of parenting without in-home nursing support Why quality of life is often misunderstood—and deeply personal This is a story of advocacy, resilience, and redefining what's possible What You'll Learn in This Episode What Trisomy 13 is and how it can present differently in every child Why it's important to ask questions and advocate within the healthcare system How medical bias can impact care decisions—and how to navigate it The value of support groups and connecting with other families What daily life can look like for families of medically complex children How siblings adapt and grow in families with high medical needs Why "quality of life" is subjective and should center the family's perspective Key Takeaway A diagnosis does not define a child's life—and when families are given the space, support, and information to make informed decisions, they can create a path filled with joy, connection, and meaning. Resources Mentioned SOFT (Support Organization for Trisomy 13, 18, and Related Disorders) Extra to Love Hope for Trisomy Emersynn Isla Shining Star Foundation Asher's Answer Trisomy 13 & 18 Parent Support Groups (Facebook communities) Understanding Trisomy 13 Genetic and Rare Diseases Information Center (GARD) https://rarediseases.info.nih.gov AAP Article: Guidance for Caring for Infants and Children with Trisomy 13 Follow Charlotte on Facebook This episode is a powerful reminder that behind every diagnosis is a child, a family, and a story that deserves to be fully seen and understood. If you liked this episode, listen to these Inside the Children's Hospital Episodes: A daughter with Trisomy 18 Trisomy 21 Story Connect with Us Subscribe: Never miss an episode on Apple Podcasts or Spotify. Visit insidethechildrenshospital.com to search stories and episodes easily Follow us on Instagram for updates and opportunities to connect with other parents Download SupportSpot: receive Child Life tools at your fingertips. Leave a Review: It helps other families find us and access our resources! The medical information provided is not a substitute for professional advice; please consult your healthcare team. Key Search Terms Trisomy 13, Patau syndrome, Trisomy 13 prognosis, Trisomy 13 life expectancy, Trisomy 13 baby thriving, Trisomy 13 and 18 support, SOFT organization Trisomy, NIPT high risk results, amniocentesis Trisomy 13, medical advocacy NICU, DNR without consent NICU, hospital transfer NICU, medically complex child at home, trach and ventilator at home baby, pediatric rare diagnosis, child life specialist NICU siblings, NICU sibling visits, postpartum depression NICU, Trisomy 13 quality of life, rare chromosome disorder support, AAP Trisomy 13 standards of care
#301
April 29 · 50 min
NICU, Trach and Home Care: One Family's Journey to Stability
What does it look like when life changes in an instant—and a family learns to navigate the unimaginable? In this episode of Inside the Children's Hospital, Katie Taylor sits down with Marah, a mom of four, who shares her daughter Abigail's journey after a cardiac arrest at just nine days old. What began as a healthy twin pregnancy quickly shifted into a complex medical path involving a NICU stay, life support, and long-term care needs. As Marah and her husband entered the world of medical parenting, they faced fear, uncertainty, and overwhelming decisions. Through it all, they leaned on their care team, family support, and each other—learning how to advocate, adapt, and ultimately find moments of joy within the journey. This conversation highlights the realities of raising a medically complex child, the power of community, and how resilience is built over time. You'll hear: What it was like navigating a sudden cardiac arrest in a newborn The early days in the NICU and learning to care for a medically complex child How Marah advocated for family presence and support during hospitalization The transition from crisis to confidence in managing trach and G-tube care How community, connection, and shared experiences shaped their journey The emotional realities of ongoing medical challenges, including epilepsy This is a story of advocacy, growth, and finding strength in the most unexpected places. What You'll Learn in This Episode Why learning CPR and emergency preparedness can be life-saving for families How to advocate for your child and communicate your needs with care teams The role of multidisciplinary care in managing complex medical conditions What life at home can look like with medical equipment and home nursing support How community and peer support impact long-term coping and resilience The importance of asking for help and building a sustainable support system How perspectives can shift from grief to gratitude over time This episode is sponsored by Gebauer PainEase®. We extend our sincere gratitude to Gebauer PainEase® for supporting this episode. To learn more about this product, visit their website. Key Takeaways Even in the most overwhelming moments, support, advocacy, and connection can carry families forward—and help transform crisis into a new kind of strength. Connect with Marah Instagram: In Good Complexity Resources Mentioned Emergency Preparedness for Families Infant & Child CPR (American Red Cross) https://www.redcross.org/take-a-class/cpr/performing-cpr/child-baby-cpr Trach & G-Tube Care Resources Feeding Tube Awareness Foundation https://www.feedingtubeawareness.org Building Community & Support Parent to Parent USA https://www.p2pusa.org Trach Support Mom's of Trach Babies https://www.facebook.com/groups/momsoftrachbabies/ Connect with Us Subscribe: Never miss an episode on Apple Podcasts or Spotify. Visit insidethechildrenshospital.com to search stories and episodes easily Follow us on Instagram for updates and opportunities to connect with other parents Download SupportSpot: receive Child Life tools at your fingertips. Leave a Review: It helps other families find us and access our resources! Medical information provided is not a substitute for professional advice—please consult your care team. Pediatric Health, Medical Parenting, NICU Journey, Infant Cardiac Arrest, Medically Complex Child, Children's Hospital, Pediatric Critical Care, Family-Centered Care, Patient Advocacy, Tracheostomy, G-Tube Feeding, Epilepsy in Children, Special Needs Parenting, Caregiver Support, Resilience

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