What a NICU Nurse Wants Parents to Know

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 [https://www.childrenshospital.org/], 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 [https://www.childrenshospital.org/services/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 [https://www.instagram.com/childlifeoncall/] + @insidethechildrenshospital [https://www.instagram.com/insidethechildrenshospital/] * Subscribe: Never miss an episode on Apple Podcasts [https://podcasts.apple.com/us/podcast/inside-the-childrens-hospital/id1235856283] or Spotify. [https://open.spotify.com/show/0yS0xcmc2dB9O9yQjose5u] * Visit insidethechildrenshospital.com [http://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

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 [https://rarediseases.org/]• Different Together Co. [https://www.instagram.com/differenttogetherco/] (Caitlin's Instagram) Connect with Us * Instagram: @childlifeoncall [https://www.instagram.com/childlifeoncall/] + @insidethechildrenshospital [https://www.instagram.com/insidethechildrenshospital/] * Subscribe: Never miss an episode on Apple Podcasts [https://podcasts.apple.com/us/podcast/inside-the-childrens-hospital/id1235856283] or Spotify. [https://open.spotify.com/show/0yS0xcmc2dB9O9yQjose5u] * Visit insidethechildrenshospital.com [http://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

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 [https://oley.org/], 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 [https://oley.org/] Connect with Vincent: Instagram: @chronically_fit_life [https://www.instagram.com/chronically_fitlife/] Facebook: Vincent Rosche [https://www.facebook.com/vince.rosche] Connect with us! * Instagram: @childlifeoncall [https://www.instagram.com/childlifeoncall] + @insidethechildrenshospital [https://www.instagram.com/insidethechildrenshospital] * Subscribe: Never miss an episode on Apple Podcasts [https://podcasts.apple.com/us/podcast/inside-the-childrens-hospital/id1235856283] or Spotify. [https://open.spotify.com/show/0yS0xcmc2dB9O9yQjose5u] * Visit insidethechildrenshospital.com [http://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

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 [https://phoenix-society.org/] * Sarah Steps by the Phoenix Society for Young Children [https://www.phoenix-society.org/what-we-do/saras-steps] Connect with Us * Instagram: @childlifeoncall [https://www.instagram.com/childlifeoncall/] + @insidethechildrenshospital [https://www.instagram.com/insidethechildrenshospital/] * Subscribe: Never miss an episode on Apple Podcasts [https://podcasts.apple.com/us/podcast/inside-the-childrens-hospital/id1235856283] or Spotify. [https://open.spotify.com/show/0yS0xcmc2dB9O9yQjose5u] * Visit insidethechildrenshospital.com [http://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.

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) [https://www.instagram.com/alysthenurse/] 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 [https://www.instagram.com/alysthenurse/] * TikTok: @alysthenurse [https://www.tiktok.com/@alysthenurse] Connect with Us * Instagram: @childlifeoncall [https://www.instagram.com/childlifeoncall/] + @insidethechildrenshospital [https://www.instagram.com/insidethechildrenshospital/] * Subscribe: Never miss an episode on Apple Podcasts [https://podcasts.apple.com/us/podcast/inside-the-childrens-hospital/id1235856283] or Spotify. [https://open.spotify.com/show/0yS0xcmc2dB9O9yQjose5u] * Visit insidethechildrenshospital.com [http://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