Inside the Children's Hospital

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

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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

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

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.

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

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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

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