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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Why Hospital Continuity and Staff Support Are Critical: Parents Speak Out
jeudi 7 mai 2026 • Durée 56:12
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:
This episode highlights how sharing personal journeys fosters community, advocacy, and system improvements—empowering families to be active participants in healthcare.
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.
Trisomy 13: Challenging the Narrative and Choosing Hope
Épisode 302
mercredi 6 mai 2026 • Durée 59:45
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
Key Takeaway Resources Mentioned Connect with Us Key Search Terms
Trust, Grief, and Loving Your Child Through Big Identity Changes
mercredi 4 mars 2026 • Durée 34:08
What happens when your child shares something that shifts the future you thought you understood?
In this episode of Inside the Children's Hospital, Katie sits down with Kelly Kemp — certified child life specialist of more than 30 years and mom of three — to talk about navigating trust, grief, advocacy, and love after her child was diagnosed with gender dysphoria and came out as transgender.
Kelly shares:
The phone call that changed everything
Navigating substance use and mental health concerns
Grieving privately while choosing love publicly
Rebuilding trust with her child
Supporting siblings during a major transition
Setting boundaries with extended family
Finding affirming medical and mental health care
Holding faith and parenting together during uncertainty
This conversation is not about politics. It is about parenting inside a medical diagnosis. It is about trust. It is about grief that doesn't mean rejection. And it is about the steady, protective love that children need — especially when the world feels loud.
Whether your child is navigating a medical diagnosis, identity development, or a season you didn't anticipate, this episode will remind you:
Grief and love can coexist.
Trust is foundational.
And your child still needs you.
Resources & Crisis Support:
The Trevor Project: Providing crisis intervention and suicide prevention services to lesbian, gay, bisexual, transgender, queer & questioning (LGBTQ) young people.
Call: 1-866-488-7386
203: 12 Years to Diagnosis, Understanding Four Key Emotional Reactions, and Channeling Her Story into Positive Action - Jessica's Story
mercredi 24 janvier 2024 • Durée 42:46
"If you have a question, ask it. You are the parent, you need to know" - Jessica Siddi-Sewart
How can medical parents use their experiences to promote action and advocacy?
As a child life specialist, I know that there is not one "normal" or "best" reaction for a parent when their child receives a medical diagnosis.
Today's guest, Jessica Siddi-Sewart and she helps us reflect on the different stages parents go through when facing a medical diagnosis for their child. She is also a mother of three, a paralegal, and a business owner.
I had the pleasure of meeting Jessica during our time at the American Academy of Pediatrics Conference this past October and was instantly drawn to her products and knew I wanted her to join me on the Child Life On Call podcast. Her company Puffaluffs Inc. was inspired by a personal experience with one of her sons. After giving birth at 28 weeks, a NICU stay, and a long and emotional journey to receiving a diagnosis, Jessica still found a way to make meaning and give back.
For Jessica's son, it took 12 years and hundreds of doctor appointments to receive a concrete diagnosis: DiGeorge Syndrome. She shares her journey and learned the importance of finding support and resources from families walking through similar challenges.
"It teaches you to pivot. It teaches you, you know, to learn different things and be okay. It is what it is and you will be okay"
202: Infantile Spasms, Healing from Trauma and Emotional Resilience
mercredi 17 janvier 2024 • Durée 47:30
In this episode about parenting a child with infantile spasms, Katie Taylor, a certified child life specialist, has a profound conversation with Hailey, a resilient mother navigating the complexities of raising a child with a disability. Join us as we delve into Hailey's journey, exploring the challenges and triumphs of parenting under extraordinary circumstances.
"It's not always about thriving in the traditional sense; sometimes it's about finding small victories in our daily struggles and embracing them." - Hailey Adkisson
About the Episode:
This episode offers an intimate glimpse into the life of Hailey, a mother from the Pacific Northwest, and her blended family. Hailey shares her experiences managing her professional life while being a dedicated caregiver to her youngest child, diagnosed with infantile spasms. The discussion also touches on the significance of mindfulness and the power of being present, especially during challenging times.
From the episode with Hailey and Katie, here are three key takeaways:
The Importance of Advocacy and Community: Hailey emphasizes how advocacy and connecting with a community have been vital for her. She discusses the therapeutic aspect of advocating for her child and how it has helped her connect with other families in similar situations.
Challenges and Adaptations in Parenting: The conversation highlights the difficulties of parenting a child with medical complexities. Hailey shares her experiences of managing work-life balance and the adjustments she and her family have had to make to accommodate their child's needs.
Mindfulness and Presence in Caregiving: Both Hailey and Katie touch upon the theme of mindfulness in caregiving. They discuss the challenges of staying present and mindful while dealing with recurring medical crises and the importance of finding ways to disconnect momentarily without losing focus on the child's needs.
"I've learned so much from my daughter. Even though the journey is tough, it has opened my eyes to a different kind of love and strength." - Hailey Adkisson
201: Personal Growth Theory, NEC in the NICU and Shielding Siblings - Kathryn's Story
mercredi 10 janvier 2024 • Durée 43:38
I'm his mom, and I carried him for almost nine months, and no one loved him more than me. I'm his expert, and I'm going to own that. - Kathryn Whitaker
Have you ever found yourself amazed at the strength people find in the toughest of times?
Well, on today's podcast, we're talking about one of the common themes we've seen over the past 200 episodes of Child Life On Call and something I consistently see parents share on social media.
We're talking about the incredible phenomenon of PTG, or post-traumatic growth. We're taking a special look at one of the deeply personal journeys a parent has embarked on during and after their child's medical battles. Together, we'll explore how these intense experiences can unexpectedly sow seeds of strength, knit tighter family connections, and awaken a profound appreciation for every precious moment of life. And guess what? We have a special guest, parent, and passionate advocate, Kathryn Whitaker, who's here to share her inspiring story. So grab your favorite cup of comfort, settle in, and join us as we uncover the resilience and beautiful transformation hidden within the heart of every parent's medical challenge.
Kathryn Whitaker, a proud 6th generation Texan and a mother of six, brings a wealth of personal experience and resilience to the Child Life On Call podcast. With a background in agriculture and marketing, Kathryn's journey as a seasoned NICU parent has inspired her to advocate for families facing similar challenges. Her work with Hand to Hold, a national nonprofit supporting NICU families, showcases her passion for providing strength and support to others dealing with the NICU experience. Through her difficult experiences, Kathryn has found personal growth and hope, offering valuable insights to parents navigating similar paths. Her unique perspective and unwavering resilience make her a compelling voice for anyone seeking strength and inspiration during challenging times.
You are not going to be the same person, thankfully, but hopefully a stronger, better version of the person who walked in the door, as opposed to the person who walks out. - Kathryn Whitaker
200: Anonymous questions from Instagram, Katie's personal burn story, and reflecting on 2023
Épisode 200
mercredi 20 décembre 2023 • Durée 35:40
In this milestone 200th episode, Katie delves into a unique mix of content, answering insightful questions from Instagram, sharing a personal story about her daughter Cameron's burn accident, and reflecting on the impactful moments of 2023.
The episode features discussions on a variety of books Katie read throughout the year, the best toys of 2023, and tackles the challenging aspects of balancing work and personal life as a child life specialist. Katie's candid sharing of Cameron's experience provides a heartfelt insight into the realities of parenting and healthcare challenges.
Katie also shares her thoughts on balancing professional responsibilities with personal life, offering valuable insights for child life specialists and parents alike. Additionally, she discusses her favorite books and toys of 2023, showcasing how these resources can be instrumental in child life practice.
This episode is not just a celebration of reaching a significant milestone but also a testament to the power of shared experiences and the strength of our community. Tune in to hear Katie's heartfelt reflections and valuable advice as we continue our journey together in supporting families through healthcare experiences.
Episode 199 | Kate's Story- A daughter with Infantile Spasms
Épisode 199
mercredi 13 décembre 2023 • Durée 33:16
Join me for an emotional and insightful conversation as I sit down with Kate Kostolansky in this episode of Child Life On Call. Kate, a dedicated mother and advocate, shares her touching journey of raising her daughter, Charlotte, who battles infantile spasms. In this heartfelt discussion, Kate sheds light on the challenges faced by families dealing with rare medical conditions, emphasizing the importance of parental instincts and advocating for timely medical attention. Discover Kate's inspiring efforts to create age-appropriate resources, including a poignant book and a comforting teddy bear, designed to support and educate children navigating epilepsy. This episode offers valuable insights into the world of pediatric epilepsy and the powerful impact of emotional support from peers. Kate's advocacy work and her family's emotional journey will surely resonate with anyone facing similar challenges. Tune in to gain a deeper understanding of navigating pediatric epilepsy and the remarkable strength found in advocacy and support. #InfantileSpasms #PediatricEpilepsy #ChildLife #Advocacy #RareMedicalConditions
In this episode, you will be able to:
Discover insights on parenting a child with infantile spasms.
Learn the importance of seeking timely medical attention.
Explore advocacy strategies for raising infantile spasms awareness.
Find age-appropriate resources for children with epilepsy.
The key moments in this episode are:
00:00:05 - Introduction to Childlife on Call podcast
00:01:24 - Kate's Family and Experience with Infantile Spasms
00:06:03 - Recognizing Infantile Spasms and Seeking Medical Help
00:11:37 - Advocacy for Infantile Spasms Awareness
00:15:54 - Challenges of Treatment and Advocacy
00:18:23 - Understanding the Impact of Epilepsy on Children
00:20:24 - Filling the Gap in Pediatric Epilepsy Resources
00:23:34 - Coping with EEG and Treatment 00:25:21 - Empowering Children through Understanding 00:29:30 - Resources for Children with Epilepsy
Episode 198 | Jennifer's Story- A son with necrotizing enterocolitis (NEC)
mercredi 6 décembre 2023 • Durée 27:34
In this episode of Child Life On Call, we are honored to host Jennifer Canvasser, the driving force behind the NEC Society, as she shares her poignant journey and advocacy for Necrotizing Enterocolitis (NEC) awareness in the NICU. Join us as Jennifer unveils her personal story and how she transformed her loss into a powerful force for supporting families grappling with NEC. Gain valuable insights into the pivotal role of human milk and early intervention in mitigating the risk of NEC, and the vital need for open communication between healthcare providers and families in the NICU. Jennifer also sheds light on the indispensable contribution of Child Life specialists and palliative care teams, along with the plethora of resources available on the NEC Society's website. Additionally, Jennifer delves into her touching book, "Forever Our Little One," a heartfelt guide for parents navigating the complexities of grief. Tune in to this impactful episode and be inspired by Jennifer's unwavering commitment to enhancing NEC awareness and providing unwavering support for families in the NICU.
In this episode, you will be able to:
Discover how NEC Society supports and raises awareness for families.
Learn the importance of human milk in reducing NEC risk.
Explore the significance of early intervention and communication in the NICU.
Understand the vital role of Child Life specialists in the NICU.
Find valuable resources for families dealing with NEC in the NICU.
More about Jennifer
Jennifer Canvasser is the Executive Director and founder of the NEC Society. With firsthand experience as a mother who lost her son to Necrotizing Enterocolitis (NEC), Jennifer's expertise and advocacy work in the field of NEC is invaluable. Her dedication to raising awareness and driving change is evident through her establishment of the NEC Society, which brings together researchers, scientists, and families affected by NEC. Jennifer's personal journey in the NICU has propelled her to create a platform that fosters collaboration and provides support for families facing the challenges of NEC. Her work aims to empower parents and improve outcomes for premature babies at risk of NEC. We are privileged to have Jennifer as a guest on this episode, as she shares her knowledge and personal insights to shed light on the importance of NEC advocacy.
Episode 197 | James' Story- A son with a congenital heart defect
Épisode 197
mercredi 29 novembre 2023 • Durée 43:28
In this episode, our guest James Robinson will share the keys to living life to its fullest, both inside and outside of the hospital, so that you can provide the result of bringing joy and happiness to your child's life, despite their medical condition.
James Robinson, the author of the book "More Than We Expected: 5 Years with A Remarkable Son." On today's episode, he shares his personal experience as a parent of a child with a congenital heart defect.
Living in Brooklyn, New York, James and his wife have three children, one of whom was born with a serious congenital heart defect. They navigated their way through multiple surgeries and hospital stays, learning valuable lessons along the way. James's story highlights the importance of holistic care and the impact of medical professionals, from doctors to Child Life Specialists, in providing support to families. James and his family found strength and created meaningful experiences for their child.
It was a privilege to be his father. We learned a lot through our journey about what it means to live when you have a medical condition. - James Robinson
In this episode, you will be able to:
Discover the transformative power of parenthood and how it can bring joy and strength in the face of medical challenges.
Explore the importance of transparency in navigating the realities of your child's medical condition, and how open communication can benefit both you and your child.
Learn how child life specialists in hospitals can provide support and create meaningful experiences for your child during their medical journey.
Find inspiration in stories of resilience and the power of support from other parents who have faced difficult times with their children's medical conditions.
Discover practical strategies for balancing fear and living a fulfilling life, while still prioritizing your child's health and well-being.
To request bookplates and oregano seeds: Social media: FB: Instagram: X/Twitter: All best Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter
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
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.
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.
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
Text: START to 678-678
988 Suicide & Crisis Lifeline: For mental health crises in the US.
Free Mom Hugs
WPath (World Professional Association for Transgender Health)
The Trans Family Alliance
Please note: Some organizations have private social media groups. For more information on those, you are welcome to private message Kelly Kemp.
Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform revolutionizing pediatric healthcare by putting parents at the center of the medical journey. With over 13 years of experience as a certified child life specialist, Katie has made significant contributions to the field of child life and the families she's served with over a decade of working at the bedside. She is an accomplished author, engaging child life and entrepreneurship speaker, and the Child Life On Call Podcast host. Katie's work emphasizes the vital role of child life services in supporting caregivers and enhancing children's medical journeys.
In our enlightening talk with Hailey, we discover the often-overlooked realities of caregiving and the resilience it fosters. Her parenting journey is a testament to the strength found in adversity and the importance of mindfulness in the face of life's challenges. We hope this episode inspires and provides valuable insights to caregivers and families facing similar journeys.
Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform revolutionizing pediatric healthcare by putting parents at the center of the medical journey. With over 13 years of experience as a certified child life specialist, Katie has made significant contributions to the field of child life and the families she's served with over a decade of working at the bedside. She is an accomplished author, engaging child life and entrepreneurship speaker, and the Child Life On Call Podcast host. Katie's work emphasizes the vital role of child life services in supporting caregivers and enhancing children's medical journeys.
Check out the NICU Heroes podcast for NICU professionals looking to earn continuing education credits while learning from amazing guests.
Purchase Kathryn Whitaker's book Live Big. Love Bigger. on Amazon or wherever books are sold for an inspiring and transformational read about living an intentional life.
Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform revolutionizing pediatric healthcare by putting parents at the center of the medical journey. With over 13 years of experience as a certified child life specialist, Katie has made significant contributions to the field of child life and the families she's served with over a decade of working at the bedside. She is an accomplished author, engaging child life and entrepreneurship speaker, and the Child Life On Call Podcast host. Katie's work emphasizes the vital role of child life services in supporting caregivers and enhancing children's medical journeys.
When you download our starter kit, you'll learn how to:
Give medicine to your child without it becoming a wrestling match
Prepare your child (and yourself) for a shot so they can feel less anxious
Create and use a coping plan for any medical appointment or procedure
The first sign of sniffles, or worse, shouldn't send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you're facing.
Child life specialists, get affordable PDUs on-demand here.
When you download our starter kit, you'll learn how to:
Give medicine to your child without it becoming a wrestling match
Prepare your child (and yourself) for a shot so they can feel less anxious
Create and use a coping plan for any medical appointment or procedure
The first sign of sniffles, or worse, shouldn't send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you're facing.
Child life specialists, get affordable PDUs on-demand here.
When you download our starter kit, you'll learn how to:
Give medicine to your child without it becoming a wrestling match
Prepare your child (and yourself) for a shot so they can feel less anxious
Create and use a coping plan for any medical appointment or procedure
The first sign of sniffles, or worse, shouldn't send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you're facing.
Child life specialists, get affordable PDUs on-demand here.
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