When tube feeding enters your life—whether at birth, in childhood, or adulthood—it can feel overwhelming, isolating, and misunderstood. In this special live episode of Inside the Children's Hospital, we center the voices of those with lived experience to explore what tube feeding really looks like beyond the diagnosis and discharge instructions.

Host Katie Taylor is joined by parent advocates, a young adult patient, and a pediatric dietitian to share honest, unfiltered perspectives on NG tubes, G-tubes, GJ tubes, and blended feeds. Together, they discuss early fears and misconceptions, navigating medical systems and insurance, advocating for better options, and how tube feeding can ultimately bring relief, stability, and freedom. This conversation highlights the power of community, the importance of being believed, and what compassionate, family-centered support truly looks like—for patients, parents, and professionals alike.

Today's Episode is sponsored by Moog Medical. Moog Medical is a trusted leader in infusion and enteral feeding technology, designing reliable, easy-to-use pumps that support safe, precise care for patients with complex medical needs—at home and in healthcare settings.

Resources from today's episode:

• Oley Foundation

  • Infusing Hope Conference

  • Join Oley for Community, Education, and so much more!

• Blended Tube Feeding
  • Instagram

• Luma Clean Cares

• A SXSW Short Film on the reality of tube-feeding, called 'Unholy'

Connect with Guests from Today's Episode:

• Kelsey Ward – Parent advocate and medical parent, Follow Kelsey on TikTok
• Brady Crandall – Parent advocate and founder of YouthCrews
• Alexa Quintero – Patient advocate and young adult with lived tube feeding experience
• Hilarie Geurink, RD – Pediatric dietitian specializing in flexible, real-food tube feeding, Founder of Blended Tube Feeding

Connect & Support from Child Life On Call:

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Keywords:
Tube feeding awareness, G-tube parenting, NG tube experience, GJ tube support, Medical parent advocacy, Pediatric nutrition support, Blended tube feeding, Real food tube feeding, Feeding tube myths, Medical trauma and advocacy, Young adult chronic illness, Child life support, Family-centered care, Hospital parent support, Living with feeding tubes

Medical information provided is not a substitute for professional advice—please consult your care team.

When your child's life is shaped by medical complexity, childhood can quickly become defined by hospital stays, procedures, and limitations. In today's episode, we explore how medically supported camps transform that narrative—creating space for joy, belonging, and healing for children, families, and even healthcare providers themselves.

Katie Taylor is joined by Dr. Laura Blaisdell, Chief Medical Officer of SeriousFun Children's Network, and Jamie Gentille, Child Life Specialist Leader and former camper, to share the life-changing impact of camp for children with serious illnesses. From zip-lining with oxygen tubing to late-night cabin chats that build confidence and identity, this conversation highlights how thoughtfully designed camp experiences allow kids to be kids—without compromising medical safety.

This episode explores the power of positive childhood experiences, how camps seamlessly integrate complex medical care behind the scenes, the role of child life specialists and medical volunteers in creating safe spaces for play, and why camp is just as healing for providers as it is for children. You'll also hear Jamie's personal journey from camper to child life specialist and why camp will always feel like home.

Explore Child Life On Call's directory of medical and disability-friendly summer camps for kids! This resource helps families find inclusive summer camp options that support children with medical needs and disabilities, making it easier to plan fun, safe, and engaging summer experiences.

Today's Episode is sponsored by Moog Medical. Moog Medical is a trusted leader in infusion and enteral feeding technology, designing reliable, easy-to-use pumps that support safe, precise care for patients with complex medical needs—at home and in healthcare settings.

Resources from today's episode:

Medical & Camp Support:

• SeriousFun Children's Network
  
  

• Hole in the Wall Gang Camp
  
  

• Painted Turtle Camp
  
  

• Medical volunteer opportunities through SeriousFun
  

Connect & Support from Child Life On Call

• 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!

Keywords:
Medically complex children, Pediatric medical camps, SeriousFun Children's Network, Child life specialist, Positive childhood experiences, Pediatric chronic illness support, Medical trauma healing, Camp for children with illness, Family-centered care, Pediatric resilience, Provider burnout prevention, Therapeutic play, Sibling support, Pediatric healthcare community

Medical information provided is not a substitute for professional advice—please consult your care team

When your child survives one medical emergency only to face another, parenting becomes a constant act of advocacy and courage. Today's guest joins us to share her daughter's journey with rare and complex medical conditions, from early respiratory failure and unexplained hospitalizations to epilepsy, lung disease, and life with medical uncertainty. As a military spouse navigating deployments, Brittany shares what it means to walk this path largely alone, trust her instincts as a mother, and fight to be believed by medical professionals.

This episode explores navigating rare disease without clear answers, the life-changing impact of compassionate child life support, supporting siblings through medical trauma, and how rituals, play, and community help families find hope and meaning in the midst of chaos.

Download our free Children's Hospital Passport to help empower your child and family during hospital stays.

Sponsored in part by HealthWell Foundation—learn how you can help families afford life-saving medications at healthwellfoundation.org.

Resources from today's episode:

Medical Support:

• Stanford Children's Health
• Undiagnosed Diseases Network

Nonprofit & Community Support:

• Live Like JoJo Foundation
• The Meg Foundation (Pediatric Pain & Poke Plans)
• Brave Bears Club (Epilepsy Support)
• Child Life Mommy
• CHYP

Connect with Brittany

Follow Brittany's journey as she shares life as a medical mom, military spouse, and advocate.

• Subscribe: Never miss an episode on Apple Podcasts or Spotify.
  
  

• Visit insidethechildrenshospital.com to easily search stories and episodes
  
  

• 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!

Keywords:
Rare disease parenting, Medical motherhood, Medically complex child, Pediatric lung disease, Pediatric epilepsy, Intractable epilepsy, PICU parent experience, Military family healthcare, Parent advocacy in healthcare, Child life specialist support, Sibling support during hospitalization, Parenting after medical trauma, Coping with chronic illness, Undiagnosed disease journey, Hospital parent support

Medical information provided is not a substitute for professional advice—please consult your care team

When your newborn is healthy one moment and rushed to the PICU the next, life can change in an instant. Today's guest joins us to share her son's journey with severe hemophilia—from unexpected bleeding after a routine circumcision to a spontaneous brain bleed, emergency surgery, and a months-long PICU stay. This episode explores being thrust into medical motherhood, learning to advocate under unimaginable stress, and how community, child life, and modern medicine help families navigate life with a complex diagnosis.

Download our free Children's Hospital Passport to help empower your child and family during hospital stays.

Sponsored in part by HealthWell Foundation—learn how you can help families afford life-saving medications at healthwellfoundation.org.

• Medical Support:
  Mayo Clinic Children's Center & Hemophilia Treatment Center, Rochester, MN

• Nonprofit & Community Support:
  Hemophilia Foundation of Minnesota & the Dakotas
  
  

Connect with Sami

• Follow Sami and Cooper's journey on Instagram

• Subscribe: Never miss an episode on Apple Podcasts or Spotify.
  
  

• Visit insidethechildrenshospital.com to easily search stories and episodes
  
  

• 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!
  
  

Keywords: Severe hemophilia, Hemophilia in infants, Newborn hemophilia diagnosis, Infant brain bleed, Pediatric hemophilia, Medical motherhood, PICU parent experience, Emergency brain surgery infant, Rare disease parenting, Bleeding disorders in babies, Hemophilia treatment center, Parent advocate in healthcare, Life after a NICU or PICU stay, Medically complex child, Child life specialist support, Coping with a chronic diagnosis, Parenting after medical trauma, Hemophilia A awareness, Infant seizures medical emergency, Hospital parent support

Medical information provided is not a substitute for professional advice—please consult your care team.

When your child receives a new medical diagnosis, it can feel like the world shifts beneath your feet. Today's guest joins Katie Taylor to share her daughter's Type 1 Diabetes journey—from dismissing "textbook" symptoms to navigating the financial challenges of families when it comes to chronic illness. This episode explores how one Mom moved from denial to "work mode" and how the HealthWell Foundation helps families afford life-saving medications.

Sponsored in part by HealthWell Foundation—learn how you can help families afford life-saving medications at healthwellfoundation.org.

Download our free Children's Hospital passport to empower your child to feel comfortable in the children's hospital.

• Medical Support: Sanford Children's Hospital, Sioux Falls, SD.

• Nonprofit Support: HealthWell Foundation (Pediatric Assistance Grant).

• Community & Education: Children with Diabetes (10-year coins) and Stacey Simms (Diabetes Connections), Headstrong Foundation

• Connect with Alicia directly

• Subscribe: Never miss an episode on Apple Podcasts or Spotify.

• Visit insidethechildrenshospital.com to easily search stories and episodes

• 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: Type 1 Diabetes, T1D diagnosis, HealthWell Foundation, pediatric healthcare, medical financial assistance, insulin costs, child life specialist, diabetes symptoms in kids, middle class healthcare help, medical debt, Dexcom, Omnipod, childhood chronic illness, parenting a diabetic child, Sanford Childrens Hospital, co-pay assistance, pediatric grants, medical parenting, T1D symptoms, diabetes advocate.

When your child receives a new medical diagnosis, it can feel like the world shifts beneath your feet. Here's how to move forward with clarity, support and connection, hosted by Katie Taylor and the Inside the Children's Hospital podcast.

Listen to more stories at insidethechildrenshospital.com.

Medical information provided is not a substitute for professional advice—please consult your care team.

Sponsored in part by HealthWell Foundation—learn how you can help families afford life-saving medications at healthwellfoundation.org.

Keywords:

children's hospital, NICU, child life specialist, pediatric healthcare, medical diagnosis, parental support, finding the right doctor, healthcare journey, patient-provider relationship, medical trauma, chronic illness, sibling dynamics, hospital stay tips, advocacy organizations, financial assistance, HealthWell Foundation, new diagnosis, community support, emotional coping, grief and hope, navigating insurance, parent self-care, psychosocial support, family-centered care, pediatric medication costs, medical play, patient education, online support groups, rare disease, healthcare communication, palliative care

Hear the story behind Child Life on Call's transformation into Inside the Children's Hospital. Discover what's next for families seeking support and real hospital stories.

Listen to more stories at insidethechildrenshospital.com.

Medical Legal Disclaimer: This podcast is for informational purposes only and does not constitute medical advice. Always consult your healthcare provider for guidance about your child's health.

Feeling alone after your child's diagnosis? Discover three powerful lessons that have changed how families find hope, support, and confidence while navigating pediatric healthcare.

In this solo episode, child life specialist Katie Taylor distills eight years of conversations with hundreds of families into three essential takeaways every parent needs when thrust into the pediatric healthcare world. If you're overwhelmed by medical decisions, uncertain about switching providers, or searching for ways to support your child—and yourself—during hospital life, this episode offers tangible steps and comforting wisdom.

WHAT YOU'LL LEARN:
- You are not "stuck" with your child's assigned doctor and can (and should) seek a provider who fits your family's needs
- Open communication and advocating for yourself and your child are vital in every medical setting
- Narrating medical experiences with your child helps prepare them, builds trust, and fosters resilience
- Small acts of self-care are crucial to preserving your strength as a caregiver
- Every family's coping strategy is valid; don't compare your self-care to what you see on social media

TIMESTAMPS:
0:00 - Introduction & Podcast Purpose
0:37 - Wide Range of Diagnoses Covered
1:33 - Who This Podcast Is For
2:39 - Lesson 1: You're Not Stuck With Your Doctor
5:02 - Lesson 2: How Narrating Medical Experiences Supports Your Child
6:08 - Real-Life Story: Marley's Experience With Type 1 Diabetes
8:50 - Lesson 3: Redefining Self-Care for Medical Parents
10:25 - Simple Self-Care Strategies
11:41 - What's Coming in 2026
13:12 - Important Disclaimer

RESOURCES:
- Book: "Real Self-Care" by Dr. Pooja Lakshman
- Marlee & Bain's Story on TikTok: @BainT1D
- Effie Parks/Once Upon a Gene Podcast

HOST: Katie Keating is a Certified Child Life Specialist who has spent over 15 years supporting families navigating pediatric medical experiences.

CONNECT:
Instagram: @childlifeoncall

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