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

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.

• 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

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 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.

• 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

• Dup15q Alliance

• Early Intervention Programs (available in every U.S. state)

Connect with Laura:

• Developmental Med Mom on Instagram (@developmentalmedmom)

• 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

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.

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 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.

• Learn more about Texas Children's Austin: https://www.texaschildrens.org/austin

• Learn more about Inside the Children's Hospital: https://insidethechildrenshospital.com

• 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.

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.

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.

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

• Learn more about Alongside Network: https://www.alongsidenetwork.org

• 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