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TitreDateDurée
From Peds Nurse to Cancer Mom: What Helped her Child Cope30 Sep 202600:47:01

Pediatric nurse and mom Brigid shares how her family navigated her son's neuroblastoma diagnosis—with practical guidance on preparing kids for care, accepting support, and finding hope.

Key Topics:
  • The symptoms that led to Brigid's son's neuroblastoma diagnosis

  • Going from pediatric nurse to parent receiving life-changing medical news

  • Using medical play to prepare young children for procedures

  • Giving children choices and control during repeated medical care

  • Why slowing down can sometimes make procedures easier

  • Supporting siblings through a cancer diagnosis

  • Caring for yourself while caring for a seriously ill child

  • Asking for and accepting practical support from others

  • Resources including Beads of Courage, Connecting Champions, and neuroblastoma-specific preparation tools

Timestamps

00:00 - Finding support through childhood cancer stories
01:11 - Brigid introduces her family
01:38 - Penn State THON and supporting families facing cancer
03:21 - The first sign: a persistent limp
04:55 - Night sweats, an ER visit, and the diagnosis
05:18 - Understanding neuroblastoma and treatment
06:31 - Receiving serious news in the hospital where Brigid works
10:28 - Being both mom and medical translator
11:32 - Why preparing children for procedures matters
12:52 - Medical play and repeated procedures
14:08 - Choices, breaks, and helping kids feel more in control
15:09 - Practicing dressing changes through play
16:49 - Why faster isn't always easier for kids
18:34 - The hard days and emotional toll of treatment
20:36 - Stem cell transplant and the hardest phase of treatment
21:34 - Prayer, gratitude, and staying grounded
25:31 - Simple medical play using things you already have
27:58 - Explaining cancer to siblings
28:28 - Bringing support into a sibling's school
31:12 - Child life tools that can help with procedures
34:09 - Taking cancer treatment one hurdle at a time
35:22 - What asking for help looked like for Brigid's family
39:36 - Connecting Champions and identity beyond cancer
41:00 - Beads of Courage
42:01 - Neuroblastoma resources and medical play tools
43:32 - What Brigid learned about control, patience, and time

To listen to more episodes, head to insidethechildrenshospital.com

This podcast is for educational and informational purposes only and is not a substitute for medical advice, diagnosis, or treatment. Every child and family is different. Always talk with your child's healthcare team about questions or decisions related to their care.

The experiences and opinions shared by guests are their own and do not necessarily represent the views of their employers, healthcare organizations, or Inside the Children's Hospital.

 

My Daughter Had a Brain AVM: Advocacy, Medical Trauma, and Hope23 Sep 202600:59:46

As we begin to close out NICU Awareness Month, Katie sits down with Matilda "Tilly" Aldridge, a content marketer and mom. During a normal morning, Adelaide, her oldest child, was rushed to the hospital after Tilly and her husband heard Adelaide screaming from her room. She was given a CT scan, and a large tumor was found in her brain. 

Tilly recounts her experience not only dealing with the sudden occurrence of Adelaide's medical emergency, but also how Adelaide herself was able to overcome the trauma she suffered. Together, Tilly and Katie dig into what advocating for answers can entail, and finding joy in the aftermath. 

Timestamps 

1:40 - Introduction to Tilly's Journey

4:28 - Navigating Parenthood During COVID

7:21 - Impact of Postpartum Depression 

10:41 - Life-Altering Medical Emergency

13:18 - Understanding AVIM 

16:10 - The Road to Recovery 

22:13 - Managing Anxiety in Children 

25:17 - Empowering Children Through Choices

32:04 - The Impact of Medical Trauma 

37:00 - The Search for Answers 

43:57 - The Fight for Medical Attention 

49:07 - The Joys of Motherhood Post-Trauma

Resources

What is AVM

What is AVF

Medical information shared in this episode is not a substitute for professional medical advice. Please consult your healthcare team for guidance specific to your child and family.

 

The Long-term Effects of Short-term Medical Decisions: A parent's story of NEC, the NICU and Short Bowel Syndrome16 Sep 202601:04:31

Welcome back to NICU Awareness Month. In this episode, Katie is sitting down with Kim Holland, mom of Tripp who was born at 27 weeks and also developed NEC. NEC, or Necrotizing Enterocolitis, is the inflammation of the intestine that often leads to the death of intestinal tissue/lining, which caused Tripp to undergo multiple surgeries and spend months in the NICU.  

Kim delves into the raw emotions she went through during her pregnancy with Tripp and his stay in the NICU as she had to make tough medical decisions. She also gives us some insight into how she coped and was ultimately able to create a new normal after the NICU. Katie and Kim speak on how to build community and support during a time of healing for all parents. 

Timestamps

00:00 - Introduction 

1:30 - Kim's Family and Background 

4:18 - Emergency C-Section and Preeclampsia Experience

7:39 - Tripp's Birth and NICU Journey

10:20 - Navigating the NICU 

13:28 - Understanding NEC and its Impact 

16:33 - Surgery and the Role of Faith 

19:25 - Post-Surgery and Ongoing Challenges 

34:57 - The Grim Reality of Medical Decisions

46:28 - Coping Mechanisms in the NICU 

54:26 - Life After the NICU 

58:34 - Building Community and Support 

 

Medical information shared in this episode is not a substitute for professional medical advice. Please consult your healthcare team for guidance specific to your child and family.

Best Children's Hospitals (US News): What Parents Need to Know15 Sep 202600:31:50
How U.S. News Ranks Children's Hospitals—and What Parents Should Know

Every year, U.S. News & World Report releases its Best Children's Hospitals rankings—but what do those rankings actually tell families?

In this episode, Katie Taylor, CCLS, speaks with Jennifer Winston, senior health data scientist at U.S. News & World Report, about how the rankings are built, what the scores measure and how parents can use them without over-reading small differences between hospitals.

Jennifer explains the role of clinical outcomes, hospital resources and care practices in the rankings, along with how parent feedback is incorporated into the methodology. Katie brings in the child life perspective, asking where psychosocial support, interpreter services, family involvement and emotional safety fit into the definition of excellent pediatric care.

They also explore an important question for families: Is traveling to a nationally ranked hospital always better, or can receiving care closer to home sometimes matter more?

What you'll learn
  • How the Best Children's Hospitals rankings have evolved from clinician surveys into a data-heavy model involving more than 1,000 data points across 11 pediatric specialties

  • The three primary scoring categories: hospital resources, delivery of care and best practices, and clinical outcomes

  • Why the outcomes being measured vary by specialty

  • How child life specialists, social workers, interpreter services and parent participation are represented in the rankings

  • How feedback from parents and patient advocates reaches the teams shaping the methodology

  • What it means for a hospital to make the national Honor Roll

  • Why a move from No. 15 to No. 20 may represent only a very small difference in score

  • When traveling for highly ranked care may be helpful—and when proximity to home matters

  • How families can use regional rankings, state rankings and hospital scorecards to look beyond one overall number

  • Why increased hospital participation may signal a growing commitment to transparency

Explore the rankings

View the official U.S. News Best Children's Hospitals rankings.

Parents can also search for pediatric hospitals and care by location or specialty.

Rather than relying only on a hospital's overall rank, families can explore individual specialty rankings and hospital scorecards to learn more about outcomes, staffing, available services and other factors that may matter for their child.

Episode timestamps
  • 00:00 — Katie opens with the show's purpose and introduces Jennifer Winston

  • 00:17 — Jennifer shares her role at U.S. News and her background in medical geography

  • 02:15 — How the Best Children's Hospitals rankings have evolved

  • 03:59 — The three-part methodology behind the rankings

  • 05:00 — How clinical outcomes differ by specialty

  • 06:09 — What the Honor Roll means

  • 07:00 — Katie explains child life and family-centered support

  • 08:57 — Where child life, social work and parent involvement fit in the scoring

  • 11:56 — How parent feedback reaches the methodology team

  • 13:34 — Should families travel for ranked care or stay closer to home?

  • 14:18 — Using regional and state rankings to find care nearby

  • 15:26 — Regional differences in access to pediatric specialty care

  • 16:22 — How different are hospitals ranked No. 15 and No. 20?

  • 17:29 — What hospitals can learn from higher-ranked programs

  • 19:23 — How children's hospital rankings differ from maternity rankings

  • 21:02 — Maternity care deserts and access to care

  • 21:58 — Do children's healthcare deserts exist?

  • 23:39 — Why outcomes, best practices and resources remain central

  • 24:47 — What parents can ask for when their child is unexpectedly hospitalized

  • 26:56 — Why growing hospital participation is encouraging

  • 28:08 — Closing thoughts

Notable quotes

"We really do rely on the experts who are on these working groups to help us make those decisions."

"These are all hospitals that are providing great-quality care."

"It's important for families who need information."

About Inside the Children's Hospital

Inside the Children's Hospital shares what families lived, what they learned and what they want you to know. Hosted by Katie Taylor, a certified child life specialist, the podcast helps families better understand pediatric healthcare and feel more prepared to participate in their child's care.

Medical disclaimer: This podcast is for educational and informational purposes only and is not a substitute for individualized medical advice, diagnosis or treatment. Always speak with your child's healthcare team about questions or decisions related to their care.

The NICU Waiting Game: NICU Awareness Month09 Sep 202600:32:40

Continuing NICU Awareness Month, in this week's episode, Katie is talking to Emily Rosen, the author of Waiting for Max: A NICU Story. Emily is a mom to 2 children, Max and Eva. Emily's book is about her experience being a parent in the NICU, with the hopes that the book can help communicate with other NICU families that they aren't alone in this journey. 

Throughout the episode, Emily details the emotions she went though as a parent, along with giving advice as to how to navigate new and possibly frightening feelings that came be brought on. Together, Emily and Katie walk through the different treks of healing that parents/families go through after being in the NICU, and how not all journeys follow the same path. 

Timestamps

00:00 - Introduction to Emily 

1:39 - Meet Emily Rosen

4:09 - Emily's Journey to Motherhood 

7:48 - The NICU Experience

13:42 - The Emotional Toll of the NICU 

19:51 - Creating a Children's Book for NICU Families

23:27 - The Decision to Expand the Family

28:05 - Healing through Storytelling  

Resources Mentioned

Emily's Book

Emily's Instagram

 

Medical information shared in this episode is not a substitute for professional medical advice. Please consult your healthcare team for guidance specific to your child and family.

 

GalTheBabyDoc: Humor + Humanity in the NICU02 Sep 202600:38:27

September is NICU Awareness Month, and in this week's episode, Katie sits down with Dr. Gal, @galthebabydoc, a Neonatologist and Pediatrician, and a dad with experience as a parent in the NICU. He shares his knowledge and experience on social media in digestible ways to help parents and others feel comfortable during difficult times.

Throughout the episode, they delve into the experiences and emotions of what parents might be facing when their baby is in the NICU, and how parents can get the most out of communicating with the hospital's healthcare providers. Dr.Gal, having experience on both ends of the spectrum, brings a unique perspective on how to properly handle sensitive topics between both parties. 

Timestamps 

00:00 - Meet Dr.Gal

1:52 -  Introduction and connection to Dr.Gal 

3:59 - The Journey to Neonatology 

6:39 - The Role of Humor in Medicine 

9:43 - Navigating Rounds: Best Practices for Parents

12:49 - Understanding the Attending's Responsibilities 

15:56 - The Importance of Family Presence in the NICU 

20:04 - A Day in the Life of a Neonatologist 

21:22 - Personal Experiences Shaping Professional Perspectives 

24:38 - The Emotional Impact of the NICU Admissions 

26:45 - Building Trust Through Transparency 

29:47 - Humor in Medicine

33:42 - Understanding the Father's Experience in the NICU 

 

Resources Mentioned

Dr.Gal's Tiktok Account

Dr.Gal's Instagram Account

 

Medical information shared in this episode is not a substitute for professional medical advice. Please consult your healthcare team for guidance specific to your child and family.

How to Talk to Kids About the Things We Wish They Didn't Have to Face [Palliative Care]26 Aug 202600:30:05

How do families navigate a serious childhood diagnosis while still focusing on hope, quality of life, and the everyday moments that matter most?

In this episode of Inside the Children's Hospital Podcast, Katie Taylor sits down with Dr. Korie Leigh, PhD, CCLS, a child life specialist, psychologist, thanatologist, author, educator, and pediatric palliative care advocate. Drawing on more than two decades of supporting children and families, Dr. Leigh shares what pediatric palliative care really is—and why it is so much more than many families believe.

Together, they explore how pediatric palliative care supports children living with serious or complex medical conditions from the time of diagnosis, helping families manage not only medical needs, but also emotional, psychosocial, and spiritual well-being. Dr. Leigh discusses how parents can advocate for palliative care services, even if they are not offered at their local hospital, and explains why caregiver support and respite care are essential parts of caring for the whole family.

The conversation also dives into resilience, grief, and the power of creativity. Dr. Leigh shares how writing can become a meaningful tool for processing difficult experiences, why preparing children for life's hardest moments matters, and how her books were created to help families navigate conversations surrounding illness, hospitalization, and loss with confidence and compassion.

Whether you're navigating a new diagnosis, caring for a child with a complex medical condition, supporting a family through hospitalization, or you're a healthcare professional looking to better understand pediatric palliative care, this episode offers practical insights, encouragement, and hope.

In This Episode, We Discuss:

  • What pediatric palliative care really means

  • The difference between palliative care and hospice

  • Why palliative care should begin at diagnosis

  • How parents can advocate for pediatric palliative care

  • Finding support when services aren't available locally

  • Caregiver burnout and the importance of respite care

  • Building resilience during a child's medical journey

  • Talking with children about illness, grief, and loss

  • Using writing and creativity as tools for healing

  • Improving access to pediatric palliative care through advocacy

 

Episode Timestamps

00:00 Meet Dr. Korie Leigh

02:33 A career in child life and palliative care

05:25 What is pediatric palliative care?

08:00 How parents can advocate for support

10:59 Insurance and access to care

12:05 Why respite care matters

14:18 Supporting families beyond the hospital

15:07 Building resilience through crisis

19:13 Writing through grief and healing

22:26 Creativity as a coping tool

27:29 Books, music, and final reflections

Resources Mentioned

Medical information shared in this episode is not a substitute for professional medical advice. Please consult your healthcare team for guidance specific to your child and family.

 

Helping Kids Cope With Needles: The Science Behind Buzzy19 Aug 202600:52:12

In this episode of Inside the Children's Hospital Podcast, Katie Taylor sits down with Dr. Amy Baxter, pediatric emergency physician, researcher, inventor of Buzzy®, and founder of Pain Care Labs, to explore how childhood experiences with needles can shape a lifetime of healthcare interactions—and what parents and healthcare professionals can do to help.

After watching her own son develop a fear of needles despite her expertise in pediatric pain management, Dr. Baxter began researching why children experience pain differently and how simple, evidence-based strategies can reduce pain during vaccines, blood draws, IV placements, port access, and other medical procedures. Her work ultimately led to the invention of Buzzy®, a device now used by families and healthcare professionals around the world.

Katie and Dr. Baxter discuss the science behind pain, why multiple painful procedures can have a lasting impact on children, and how connection, preparation, and developmentally appropriate support can help children build confidence instead of fear. They also share practical strategies parents can use during medical procedures, the role of child life specialists, and why helping children feel safe matters just as much as reducing physical pain.

Whether you're preparing your child for routine vaccines, navigating frequent hospital visits, supporting a child with a chronic medical condition, or caring for pediatric patients, this episode offers compassionate, research-informed insights that can help make medical experiences less overwhelming for children and families.

In This Episode, We Discuss:

  • Why children develop pain memories from medical procedures

  • Reducing pain during vaccines, blood draws, IVs, and port access

  • The research behind Buzzy® and vibration therapy

  • Helping children feel safe during medical procedures

  • Child life strategies that support coping and resilience

  • The importance of caregiver connection during painful procedures

  • Developmentally appropriate preparation and distraction techniques

  • Practical ways parents can advocate for pain management

  • Dr. Amy Baxter's journey from pediatric emergency physician to medical innovator

  • The future of non-medication approaches to pediatric pain management

 

Episode Timestamps

00:00 Meet Dr. Amy Baxter
02:15 Why Buzzy was created
03:40 Understanding childhood needle pain
06:00 Why multiple shots matter
10:20 Child life and helping kids feel safe
12:15 The story behind Buzzy
20:20 Using Buzzy for vaccines, IVs, and ports
24:30 Distraction that actually works
28:20 Building safety and resilience during procedures
31:40 The future of pain management research
38:10 Where families can find Buzzy
41:00 Lessons from innovation and advocacy

Resources Mentioned

 

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 healthcare team for guidance specific to your child and family.




YouTube Description

How can parents make shots, blood draws, IVs, and other medical procedures less painful for their children?

In this episode of Inside the Children's Hospital Podcast, Katie Taylor, CCLS, sits down with Dr. Amy Baxter, MD—pediatric emergency physician, researcher, founder of Pain Care Labs, and inventor of Buzzy®—to discuss the science behind pediatric pain management and how small changes can make a big difference during medical procedures.

After realizing she couldn't prevent her own son's fear of needles, Dr. Baxter dedicated her career to understanding why children experience pain the way they do and developing evidence-based solutions to help. Her work has transformed how families and healthcare professionals approach vaccines, blood draws, IV placements, port access, and other procedures that children with medical complexity often experience.

Together, Katie and Dr. Baxter explore why children's early medical experiences matter, how child life principles help children build resilience, and practical ways parents can help their child feel safer and more supported during healthcare visits. They also discuss the research behind vibration and cold therapy, the importance of preparation and caregiver connection, and the future of non-medication pain management.

Whether you're preparing for routine vaccines, navigating frequent lab work, supporting a child with a chronic medical condition, or you're a child life specialist or pediatric healthcare professional, this conversation is filled with compassionate, practical insights to help children experience less pain and more confidence.

In This Episode
  • Why childhood pain experiences matter

  • The science behind Buzzy® and pediatric pain management

  • Helping children through shots, blood draws, IVs, and port access

  • Child life strategies that reduce stress during procedures

  • Why connection with caregivers helps children cope

  • Effective distraction techniques that actually work

  • Practical ways parents can advocate for better pain management

  • Dr. Amy Baxter's journey from pediatric ER physician to inventor

  • The future of vibration therapy and pediatric pain research

⏱️ Timestamps

00:00 Meet Dr. Amy Baxter
02:15 Why Buzzy was created
03:40 Understanding childhood needle pain
06:00 Why multiple shots matter
10:20 Child life and helping kids feel safe
12:15 The story behind Buzzy
20:20 Using Buzzy for vaccines, IVs, and ports
24:30 Distraction that actually works
28:20 Building safety and resilience
31:40 The future of pain management research
38:10 Where families can find Buzzy
41:00 Innovation, advocacy, and hope

Resources Mentioned
  • Pain Care Labs

  • Buzzy®

  • Buzzy Helps (Instagram)

  • Dr. Amy Baxter on LinkedIn

  • Dr. Amy Baxter's TED Talk

  • Pain Care Labs "What Works for Pain" Guide

  • Pain Care Labs "What Works for Needle Fear" Guide

Dr. Amy Baxter, MD, is a pediatric emergency physician, inventor, researcher, and founder of Pain Care Labs. Internationally recognized for her work in pediatric pain management, Dr. Baxter invented Buzzy® after watching her own son develop a fear of needles despite her expertise as a physician. For more than 20 years, she has researched how vibration, cold therapy, and developmentally appropriate support can reduce pain during vaccines, blood draws, IV placements, and other medical procedures. Her mission is to help children experience less pain, less trauma, and more confidence during healthcare experiences. 

 

❤️ If this episode helped you, please like, subscribe, and share it with another family or healthcare professional who could benefit from these resources.

📱 Connect with us
Instagram: @childlifeoncall + @insidethechildrenshospital
🌐 Website: insidethechildrenshospital.com

🎧 Listen on Apple Podcasts, Spotify, or wherever you get your podcasts.

 

#childlife #pediatrics #medicalparent #hospitalparent #vaccines #blooddraw #IVtherapy #painmanagement #needlepain #childrenshospital #buzzy #medicaltrauma #caregiver #pediatrichealthcare #childlifespecialist #medicalcomplexity #parenting #podcast #amybaxter #paincare

When You Become Your Child's Advocate Overnight12 Aug 202600:32:08

What happens when the child you've dreamed of suddenly receives a diagnosis you've never even heard of? For Deborah, it was Angelman syndrome.

In this episode of Inside the Children's Hospital Podcast, Katie Taylor sits down with Deborah Trejo, Art Therapist, to share the powerful story of her daughter Maya's journey to an Angelman syndrome diagnosis. After months of feeding difficulties, developmental delays, seizures, and countless unanswered questions, Deborah and her family finally received a diagnosis just one day after Maya's first birthday.

Deborah opens up about the emotional realities of medical motherhood—from surviving the uncertainty of the diagnostic process to learning how grief and joy can exist together. She shares how finding community through the Angelman Syndrome Foundation, connecting with other parents, and embracing art as a tool for healing helped her navigate one of the most difficult seasons of her life.

As both a mother and an art therapist, Deborah also reflects on maintaining her identity beyond caregiving, advocating fiercely for her daughter's needs, and celebrating every milestone along the way. Her story is an honest reminder that while a rare diagnosis may change the path a family expected, it can also reveal extraordinary resilience, purpose, and hope.

Whether you're a parent navigating a rare diagnosis, caring for a child with complex medical needs, or a healthcare professional supporting families through uncertainty, this episode offers compassionate encouragement and a reminder that you are never alone.

In This Episode, We Discuss:
  • Deborah's journey from children's hospital volunteer to art therapist
  • Maya's first year and the road to an Angelman syndrome diagnosis
  • Early signs including feeding difficulties, developmental delays, and seizures
  • The emotional experience of waiting for answers after neurological testing
  • Receiving a rare diagnosis and processing grief as a family
  • The importance of connecting with other parents and diagnosis-specific support organizations
  • How art became a source of healing and resilience
  • Balancing motherhood, career, and personal identity
  • Becoming a strong advocate for a child with complex medical needs
  • Finding joy while navigating the realities of medical parenting
Episode Timestamps

00:00 Meet Deborah Trejo

01:30 Maya's first year and the journey to diagnosis

05:30 Birth during COVID and early medical concerns

08:00 Developmental delays, seizures, and meeting neurology

11:25 Receiving the Angelman syndrome diagnosis

13:00 Processing grief and surviving the unknown

19:15 Becoming an art therapist through lived experience

21:15 Holding onto identity beyond medical motherhood

24:00 The Angelman Syndrome Foundation and family support

26:50 Learning to ask for help

28:45 Advocacy, milestones, and celebrating progress

31:55 Maya's joy and final reflections

Resources Mentioned
  • Angelman Syndrome Foundation
  • Angelman Syndrome Foundation (ASF) — this is the organization's official name.
  • Foundation for Angelman Syndrome Therapeutics (FAST) — another major Angelman organization, particularly focused on research and therapeutics.
  • First 100 Days Journey 
  • ASF Family Champions 
  • Clinical Care Toolkit 
  • NIH/NINDS Angelman syndrome information

Connect with Us

Medical information shared in this episode is not a substitute for professional medical advice. Please consult your healthcare team for guidance specific to your child and family.

Keywords: Angelman syndrome, Angelman syndrome diagnosis, rare disease, rare genetic disorder, developmental delays, seizures in children, medical motherhood, caregiver support, parenting a child with disabilities, pediatric neurology, rare diagnosis, art therapy, family centered care, child life specialist, medically complex children, disability advocacy, parent support, pediatric healthcare, Inside the Children's Hospital Podcast

Doctor Visits, Diagnoses, and Difficult Conversations: A Parent's Guide to Knowing What to Say05 Aug 202600:58:04

What do you do when your child receives a diagnosis and your mind suddenly goes blank?

Whether you're hearing difficult news for the first time or preparing your child for a medical procedure, knowing what to ask—and how to support your child—can feel overwhelming.

In this episode of Inside the Children's Hospital, Katie Taylor, Certified Child Life Specialist, is joined by Dr. Mona Amin, board-certified pediatrician, founder of PedsDocTalk, and Chief Medical Officer at Poppins, for an honest conversation about helping families navigate some of the hardest moments in healthcare.

Together, they share practical strategies for asking the right questions after a diagnosis, preparing children for medical procedures in developmentally appropriate ways, and supporting both parents and children through fear, uncertainty, and overwhelming emotions. Dr. Mona also shares her own experience as both a pediatrician and the mother of a child who experienced a neonatal stroke, offering a unique perspective from both sides of the hospital bed.

Whether your child is facing a new diagnosis, an upcoming surgery, blood work, vaccinations, or ongoing medical care, this episode will leave you feeling more prepared, informed, and empowered.

In This Episode:

00:00 – Why difficult medical conversations can leave parents feeling overwhelmed
2:12 – Meet Dr. Mona Amin and her work supporting families through PedsDocTalk and Poppins
5:02 – How virtual pediatric care is helping families access support sooner
6:53 – What parents should ask after receiving a new diagnosis
8:16 – Why your brain "goes offline" during difficult news
13:42 – How to pause, regulate emotions, and advocate for your child
18:31 – Should parents Google a diagnosis? How to find trustworthy information
23:15 – The importance of hope while navigating uncertainty
31:21 – How children understand illness differently at every developmental stage
35:57 – Preparing toddlers and preschoolers for medical experiences
39:38 – Supporting school-age children through needles, procedures, and fear of pain
42:38 – Why you should never use the doctor as a threat
44:00 – Preparing children for blood draws, MRIs, vaccines, and procedures
46:23 – What to do when your child is completely dysregulated during a medical procedure
52:18 – Comfort positioning, honest communication, and building trust with children
56:07 – Helping children express big feelings while remaining their safe place

You'll Learn:
  • The most important questions to ask after a new diagnosis

  • How to stay grounded when emotions take over

  • Developmentally appropriate ways to explain illness to children

  • How to prepare kids for medical procedures without increasing anxiety

  • Why honest language builds trust with children

  • How to respond when your child is scared or dysregulated

  • Why connection matters more than perfection

  • Ways to help children develop confidence during medical experiences

Resources Mentioned

 

 

Connect with Us

 

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 medical diagnosis, pediatric diagnosis, child life specialist, Dr. Mona Amin, PedsDocTalk, preparing kids for medical procedures, talking to kids about illness, helping children cope with illness, questions to ask after a diagnosis, child receives a diagnosis, pediatrician advice, preparing kids for blood draws, preparing kids for vaccines, hospital anxiety in children, pediatric healthcare, family-centered care, medical parenting, supporting children through healthcare, pediatric patient education, parenting a medically complex child

Prader-Willi Syndrome: Why Caregiving Moms Need Community and Support29 Jul 202600:33:53

When your child receives a diagnosis, everything changes. In this heartfelt episode, Katie Taylor welcomes back Jessica Patay, founder of We Are Brave Together, to discuss the emotional realities of caregiving, raising a son with Prader-Willi syndrome and autism, and why supporting the mental health of caregiving moms is essential.

Jessica shares how a mentor mom transformed her own journey after her son's diagnosis and how that experience inspired her to create We Are Brave Together, a thriving community supporting thousands of caregiving mothers worldwide. She also introduces her newest book, Suddenly Brave Together, a collection of letters written by experienced caregiving moms to families navigating a new diagnosis.

Together, Katie and Jessica explore the importance of community, finding hope through shared experiences, navigating the transition into adult healthcare, and why caregivers deserve just as much support as the children they care for.

Whether you're parenting a child with a rare disease, disability, medical complexity, neurodivergence, or chronic illness, this conversation is a reminder that you never have to walk this journey alone.

In This Episode:

1:58 – Meet Jessica Patay and her family's journey with Prader-Willi syndrome
5:45 – What is We Are Brave Together?
8:10 – Jessica's new book, Suddenly Brave Together
11:05 – The letter Jessica wrote to newly diagnosed moms
13:10 – Why caregiver mental health matters
15:55 – The mentor mom who changed everything
17:15 – How moms can become Connection Circle leaders
21:30 – Supporting moms navigating behavioral challenges
23:15 – Where to find Jessica's books and resources
24:15 – Transitioning from pediatric to adult healthcare
27:45 – Why caregivers still need a village after childhood
30:45 – Creating spaces where caregivers feel seen, not judged
32:45 – Why supporting moms strengthens the entire family

Resources Mentioned

• We Are Brave Together: https://www.wearebravetogether.org
• Learn about Connection Circles and caregiver retreats
• Suddenly Brave Together and Becoming Brave Together

Connect with Us

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: 

Prader-Willi syndrome, We Are Brave Together, caregiver mental health, caregiving moms, special needs parenting, medically complex children, rare disease parenting, autism parenting, caregiver support, parent support community, new diagnosis support, disability parenting, family caregiving, pediatric to adult healthcare transition, Connection Circles, caregiver burnout, parenting after diagnosis, medically complex parenting, Jessica Patay, caregiving community

 

How Child Life Specialists Help Children Thrive During Hospital Stays22 Jul 202600:29:21

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, 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

Connect with Us

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 & Hope15 Jul 202600:39:30

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

 

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-Obstruction08 Jul 202601:03:27

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!

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 Injuries01 Jul 202600:34:20

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

Connect with Us

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 Know24 Jun 202600:32:54

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

Connect with Us

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

 
Recognizing Infantile Spasms: Navigating a Diagnosis as a Nurse Practitioner17 Jun 202600:40:01

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:

Connect with Laura:

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

What Happens When Your Child Needs an Ambulance, Helicopter, or Medical Transport?10 Jun 202600:32:53

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.

About Our Guests Kami Stone, MSN, RN, NE-BC

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 Willets Martinez, EMT

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.

Resources & Links Connect with Child Life On Call
  • 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.

 

When the Hospital Stay Ends: Understanding Pediatric Medical Traumatic Stress03 Jun 202600:39:53

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.

About Our Guest Jen Aspengren

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.

About Alongside Network

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

Resources & Links 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.

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

From Pharmacist to Mom: Navigating Type 1 Diabetes and Celiac Disease27 May 202600:40:48

What happens when the healthcare professional becomes the parent sitting on the other side of the diagnosis?

In this episode, Katie Taylor sits down with Melissa Apa—a clinical pharmacist, diabetes educator, and mom—to share her family's journey navigating both celiac disease and type 1 diabetes with her young son. Melissa opens up about the emotional overwhelm of receiving life-changing diagnoses, even with years of medical expertise behind her, and how her family learned to adapt, advocate, and find stability in the chaos.

From replacing every pot and pan in her kitchen overnight to teaching her six-year-old how to manage his insulin pump, Melissa shares the realities of parenting a child with chronic illness while balancing work, marriage, caregiving, and the emotional toll of always being "on."

Together, Katie and Melissa explore the invisible mental load medical parents carry, the importance of empowering kids to advocate for themselves, and why support systems matter just as much as medical education.

This conversation is honest, practical, and deeply hopeful for any parent navigating a chronic diagnosis with their child.

What You'll Hear in This Episode:

  • The unexpected appointment that changed everything with a celiac diagnosis

  • Why Melissa says her entire career prepared her to care for her son

  • The emotional impact of becoming both a healthcare provider and a medical mom

  • How type 1 diabetes and celiac disease are often connected

  • The pressure parents feel around "good" and "bad" numbers in diabetes care

  • Why medical parents need systems, routines, and "go bags" to survive daily life

  • Teaching children to advocate for themselves in school and healthcare settings

  • The realities of never fully stepping away from caregiving responsibilities

  • How Melissa and her husband creatively protect their relationship and mental health

  • Why diabetes management can become more manageable with support and practice

Key Takeaways:

  • Chronic illness management is emotional—not just medical

  • Blood sugar numbers are data, not moral judgments

  • Kids are capable of learning and advocating for themselves earlier than we think

  • Systems and routines can reduce overwhelm for families

  • Caregivers deserve support, too

  • The beginning of a diagnosis journey is often the hardest part—but it won't always feel this overwhelming

About Our Guest:
Melissa Apa is a clinical pharmacist, diabetes educator, podcast host, and mom of two from Buffalo, New York. After diagnosing her son with type 1 diabetes and navigating celiac disease as a family, Melissa shifted her focus toward helping families manage chronic illness with more confidence, support, and sustainable systems. Through coaching, education, and advocacy, she helps parents move from survival mode to feeling empowered in everyday life.

Resources & Links:

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:
type 1 diabetes, celiac disease, parenting a child with diabetes, diabetes mom, medical parenting, chronic illness parenting, pediatric diabetes, celiac diagnosis, type 1 diabetes support, caregiver mental health, diabetes advocacy, medical mom podcast, child chronic illness support, parenting through diagnosis

 

A NICU Dad Story: Life After a 25 Week Premature Birth20 May 202600:49:52

"I kept telling her, 'We've got this.' And inside, I had no clue what was coming next."

What does it look like to be "the strong one" when your world is falling apart?

In this episode, Katie Taylor sits down with Jared Muscat—dad, surfer, and self-proclaimed "dad-vocate"—to share his family's unexpected journey into the NICU after a high-risk pregnancy. From a routine 20-week appointment to welcoming his son Ollie at just 25 weeks, Jared opens up about fear, resilience, and what it means to show up as a partner and father in crisis.

He shares the emotional weight of protecting his family while processing his own grief, the importance of finding support, and how small rituals—like late-night NICU visits and lullabies—helped him bond with his son.

This is an honest, heartfelt conversation about fatherhood, vulnerability, and the strength it takes to keep going when nothing feels certain.

What You'll Hear in This Episode:
  • The moment everything changed during a routine pregnancy appointment

  • Navigating uncertainty, fear, and decision-making as a dad and partner

  • The emotional experience of becoming a NICU parent overnight

  • How Jared balanced supporting his wife, caring for his older son, and coping himself

  • The power of routines, community, and finding other dads who understand

  • What bonding looks like in the NICU—and the moment it finally clicked

  • Life after the NICU and adjusting to a new normal at home

 

Key Takeaways:
  • Dads experience deep emotional strain in the NICU—often quietly

  • You don't have to carry everything alone—finding support is essential

  • Small, consistent rituals can create stability in chaos

  • Bonding doesn't always happen immediately—and that's okay

  • The NICU feels endless, but it won't last forever

About Our Guest:

Jared Muscat is a father of two, a marketing agency owner, and a passionate advocate for NICU dads. Through his own experience, he now supports other families navigating complex medical journeys.

Resources to Support NICU Families 

Connect with Jared

Instagram

Website

Connect with Us

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

 

Keywords: NICU dad, NICU father support, NICU dad mental health, premature baby dad, NICU parenting for dads, NICU dad podcast, NICU journey dad, father of preemie, NICU support for fathers, dad in the NICU

 

 

Tay-Sachs Disease: A Father's Story of Diagnosis, Parenting, and Purpose13 May 202600:51:54

In this episode of Inside the Children's Hospital, Katie Taylor sits down with Dr. Matt Goldstein—physician, biotech leader, and father—who shares the story of his daughter, Havi, and her diagnosis with Tay-Sachs disease.

Despite both parents undergoing genetic screening before starting their family, a testing error led to a missed diagnosis. Javi appeared to develop typically at first, but over time, subtle changes led to a life-altering realization: she had a rare, fatal neurodegenerative condition.

As a physician, Matt was trained to solve problems. As a parent, he was driven to protect his child. But in the face of a disease with no cure, he and his wife had to redefine what "doing everything" truly meant.

From navigating complex medical decisions to choosing presence over intervention, Matt shares how their family embraced a different path—one centered on love, connection, and living fully in the time they had.

This conversation is a powerful reflection on grief, meaning, and the transformative impact of parenthood.

You'll hear:
  • What it was like to receive a Tay-Sachs diagnosis after reassuring genetic testing

  • How a medical error changed the course of their family's life

  • The emotional tension between medical training and parental instinct

  • What it means to "do everything" in a non-medical way

  • How Havi communicated joy, preferences, and personality without words

  • The role of community and parent-to-parent connection during grief

  • How the family created meaningful traditions, including weekly "Shabirthdays"

  • The impact of loss on identity, purpose, and career direction

 

What You'll Learn in This Episode:
  • What Tay-Sachs disease is and how it affects the body

  • The limitations—and importance—of genetic screening

  • Why preventive genetics is one of the most powerful tools in modern medicine

  • How families can approach decision-making when facing life-limiting diagnoses

  • The importance of redefining quality of life beyond clinical outcomes

  • How grief and love can coexist—and shape the way we live

 

Resources Mentioned

 

Connect with Us

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

 

Keywords: 

Tay-Sachs disease, Tay-Sachs awareness, rare disease podcast, pediatric rare disease, genetic disorder, infant Tay-Sachs, neurodegenerative disease, parenting a medically complex child, caregiver support, special needs parenting, navigating rare disease, pediatric neurology, genetic testing, childhood illness, family medical journey, emotional support for families, healthcare podcast, Child Life On Call Podcast, family resilience, living with Tay-Sachs

Why Hospital Continuity and Staff Support Are Critical: Parents Speak Out07 May 202600:56:12
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:

Connect with the Guests:

This episode highlights how sharing personal journeys fosters community, advocacy, and system improvements—empowering families to be active participants in healthcare.

 

Instagram.com/childlifeoncall

 

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 Hope06 May 202600:59:45

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

  • 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

Key Takeaway

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.

Resources Mentioned SOFT (Support Organization for Trisomy 13, 18, and Related Disorders)

Extra to Love

Hope for Trisomy

Emersynn Isla Shining Star Foundation

Asher's Answer

Trisomy 13 & 18 Parent Support Groups (Facebook communities)

Understanding Trisomy 13
Genetic and Rare Diseases Information Center (GARD)
https://rarediseases.info.nih.gov

AAP Article: Guidance for Caring for Infants and Children with Trisomy 13 

Follow Charlotte on Facebook

This episode is a powerful reminder that behind every diagnosis is a child, a family, and a story that deserves to be fully seen and understood.


If you liked this episode, listen to these Inside the Children's Hospital Episodes:

A daughter with Trisomy 18

Trisomy 21 Story

 

Connect with Us

The medical information provided is not a substitute for professional advice; please consult your healthcare team.

Key Search Terms

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

 
NICU, Trach and Home Care: One Family's Journey to Stability29 Apr 202600:50:41

What does it look like when life changes in an instant—and a family learns to navigate the unimaginable?

In this episode of Inside the Children's Hospital, Katie Taylor sits down with Marah, a mom of four, who shares her daughter Abigail's journey after a cardiac arrest at just nine days old. What began as a healthy twin pregnancy quickly shifted into a complex medical path involving a NICU stay, life support, and long-term care needs.

As Marah and her husband entered the world of medical parenting, they faced fear, uncertainty, and overwhelming decisions. Through it all, they leaned on their care team, family support, and each other—learning how to advocate, adapt, and ultimately find moments of joy within the journey.

This conversation highlights the realities of raising a medically complex child, the power of community, and how resilience is built over time.

You'll hear:

  • What it was like navigating a sudden cardiac arrest in a newborn

  • The early days in the NICU and learning to care for a medically complex child

  • How Marah advocated for family presence and support during hospitalization

  • The transition from crisis to confidence in managing trach and G-tube care

  • How community, connection, and shared experiences shaped their journey

  • The emotional realities of ongoing medical challenges, including epilepsy

This is a story of advocacy, growth, and finding strength in the most unexpected places.

What You'll Learn in This Episode

  • Why learning CPR and emergency preparedness can be life-saving for families

  • How to advocate for your child and communicate your needs with care teams

  • The role of multidisciplinary care in managing complex medical conditions

  • What life at home can look like with medical equipment and home nursing support

  • How community and peer support impact long-term coping and resilience

  • The importance of asking for help and building a sustainable support system

  • How perspectives can shift from grief to gratitude over time

 This episode is sponsored by Gebauer PainEase®. We extend our sincere gratitude to Gebauer PainEase® for supporting this episode. To learn more about this product, visit their website.

Key Takeaways

Even in the most overwhelming moments, support, advocacy, and connection can carry families forward—and help transform crisis into a new kind of strength.

 

Connect with Marah

Instagram: In Good Complexity

Resources Mentioned

Emergency Preparedness for Families
Infant & Child CPR (American Red Cross)
https://www.redcross.org/take-a-class/cpr/performing-cpr/child-baby-cpr

Trach & G-Tube Care Resources
Feeding Tube Awareness Foundation
https://www.feedingtubeawareness.org

Building Community & Support
Parent to Parent USA
https://www.p2pusa.org

Trach Support

Mom's of Trach Babies

https://www.facebook.com/groups/momsoftrachbabies/

 

Connect with Us

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

Pediatric Health, Medical Parenting, NICU Journey, Infant Cardiac Arrest, Medically Complex Child, Children's Hospital, Pediatric Critical Care, Family-Centered Care, Patient Advocacy, Tracheostomy, G-Tube Feeding, Epilepsy in Children, Special Needs Parenting, Caregiver Support, Resilience

Meningitis in Children: When a Mother's Instinct Led to Life-Saving Answers22 Apr 202600:51:25

What happens when your child seems sick, but everything keeps coming back normal?

For a lot of parents, the scariest part isn't the diagnosis. It's the not knowing. It's being told everything looks fine when your gut is telling you something is off.

This week, Katie sits down with Kayleigh, a medical assistant and mom of three, to share the story of her daughter Kanessa. Almost a year after a freak eye injury that seemed to heal, Kanessa suddenly got sick. At first, it looked like a simple virus. But within days, things escalated fast.

Kaylee shares what it was like trying to make sense of symptoms that didn't quite add up. Normal test results. A child who seemed okay one minute and not the next. And that moment when everything changed with one scan.

From there, their world shifted quickly. A brain bleed. A diagnosis of bacterial meningitis. Emergency surgery. A 40-day hospital stay. Kaylee talks about what it took to keep going through all of it, while also caring for a newborn and being away from her other child.

She also shares how she supported Kanessa through it all. Being honest about what was happening. Preparing her for procedures. Letting her ask questions. And leaning on Child Life in a way that made a huge difference for both of them.

If you've ever wondered if you're overreacting or if you should push for more answers, this episode will stay with you. Kaylee's story is a reminder to trust yourself and keep advocating.

This episode is sponsored by Gebauer PainEase®. We're so grateful for their support. To learn more about this product, visit their website.

This is our 300th episode, which feels pretty surreal. We're so grateful you're here.

This episode is sponsored by Gebauer PainEase®. We extend our sincere gratitude to Gebauer PainEase® for supporting this episode. To learn more about this product, visit their website.

Special Giveaway ☕️
Your support means so much to us, and we're truly grateful for this community. As a small thank you, we're offering a $10 Starbucks gift card to the first 20 listeners who leave a review. If the podcast has made an impact on you, we'd love to hear your thoughts. Simply screenshot your review and email it to podcast@childlifeoncall.com to claim your gift. Thank you for being part of this journey with us 💛

Resources & Ways to Connect

 Connect with Kaleigh on Instagram

Facebook Meningitis Support Group

 

Connect with Us

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

Keywords:
bacterial meningitis child story, pediatric brain hemorrhage, delayed diagnosis child illness, parenting through medical trauma, child life support hospital, pediatric emergency story, advocating for your child medical care, cochlear implant child, hearing loss after meningitis, navigating pediatric hospitalization, medical parent journey, trusting parental instincts

When a Parent Has Cancer: What Kids Understand Before We Say It15 Apr 202600:47:03

What happens when your child already senses something life-changing—before anyone has found the words to say it out loud?

When serious illness enters a family, children often understand more than we realize. And for caregivers, the challenge becomes not only navigating medical decisions, but also finding the right way to support their children through it all.

This week, Katie sits down with Anna Lonon, founder of the Lonon Foundation, to share her family's story of navigating cancer when her husband Michael was diagnosed with stage three head and neck cancer at just 29 years old. While raising a young son and later welcoming a newborn daughter, Anna faced the unimaginable reality of caregiving, loss, and parenting through profound uncertainty.

Anna opens up about what it looked like to balance hospital visits, therapies, and daily life, and the emotional toll of making impossible decisions while trying to hold her family together. She shares powerful moments, including the realization that her young son understood far more about his father's illness than anyone had explained, and how that shaped the way she approached communication in the years that followed.

After later facing her own cancer diagnosis, Anna made a different choice—seeking out child life support early to guide honest, developmentally appropriate conversations with her children. Through her experiences, she highlights the importance of listening to children's cues, trusting your instincts as a parent, and creating space for both grief and resilience.

If you've ever struggled with how to talk to your child about illness, felt overwhelmed as a caregiver, or wondered how to support your family through uncertainty, this conversation offers validation, insight, and hope.

This episode is sponsored by Gebauer PainEase®. We extend our sincere gratitude to Gebauer PainEase® for supporting this episode. To learn more about this product, visit their website.

Resources from today's episode:
Visit the Lonon Foundation website

Pickles Group

Wonders & Worries

Connect with Us

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

 

Keywords:
parent cancer child support, talking to kids about cancer, caregiver mental load, parenting through illness, child life specialist support, family coping with cancer, grief and parenting, pediatric emotional support, supporting children through loss, caregiver burnout, trauma-informed parenting, childhood understanding of illness, cancer impact on families

 

Spinal Muscular Atrophy (SMA): A Parent's Journey from First Signs to Diagnosis08 Apr 202600:39:39

What happens when your instincts tell you something is wrong—but you're dismissed again and again?

For many parents, the journey to a diagnosis begins with a gut feeling—and the courage to persist in seeking answers.

This week, Katie sits down with Nikki McIntosh, author and advocate, to share the story of her son Miles, who was diagnosed with spinal muscular atrophy (SMA) at just 18 months old. After noticing delays in his ability to stand and bear weight, Nikki followed her instincts despite initial dismissal—ultimately leading to a life-changing diagnosis.

Nikki shares what those early days looked like—from navigating testing and procedures to receiving the diagnosis that changed everything. She opens up about the grief, fear, and urgency that followed, and how she quickly stepped into the role of advocate, building a care team and learning how to navigate complex medical systems in real time.. 

If you've ever questioned your instincts or felt lost navigating a diagnosis, this conversation offers validation, practical guidance, and hope.

This episode is sponsored by Gebauer PainEase®. We extend our sincere gratitude to Gebauer PainEase® for supporting this episode. To learn more about this product, visit their website.

 

Resources & Ways to Connect

Helpful Resources Mentioned

 

Connect with Us

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

Keywords:
spinal muscular atrophy, SMA child story, rare disease diagnosis child, delayed milestones baby, parenting medically complex child, rare disease advocacy, navigating pediatric diagnosis, EMG test child, pediatric neuromuscular disease, child life coping tools, supporting child through medical tests, rare disease parent support, medical parent journey, hope after diagnosis

 

 

HIE at Birth: A Dad's Story of Brain Injury, NICU Trauma, and Finding Purpose01 Apr 202600:41:18

Within minutes of arriving at the hospital, Brady and his wife were told their newborn daughter had suffered a severe brain injury.

In this episode of Inside the Children's Hospital, Katie sits down with Brady Crandall, founder of Youth Crews, to share his family's journey following a diagnosis of hypoxic ischemic encephalopathy (HIE).

What began as a routine pregnancy quickly turned into an emergency delivery, NICU stay, and a new reality as parents of a medically complex child.

Brady opens up about:

  • The shock and uncertainty of those early days
  • Navigating life as a "medical dad."
  • The balance of grief and joy that often coexist
  • How early intervention and community shaped their path

Through this experience, Brady recognized a gap many families face: a lack of dignified, age-appropriate products for children with disabilities.

That realization led to the creation of Youth Crews—a brand focused on comfort, dignity, and rethinking what medical products can look like for kids.

If you've ever found yourself wishing something existed to better support your child—or felt the pull to create change—this episode will leave you feeling seen, understood, and inspired.

This episode is sponsored by Gebauer PainEase®We extend our sincere gratitude to Gebauer PainEase® for supporting this episode. To learn more about this product, visit their website.

Resources & Ways to Connect
  • Learn more about Youth Crews and their mission to create dignified products for kids with disabilities

  • Follow Youth Crews on Instagram

Mentioned in This Episode

Connect with us! 

 

Disclaimer:
Medical information shared in this episode is not a substitute for professional advice. Please consult your care team for guidance specific to your child.


Keywords:
hypoxic ischemic encephalopathy, HIE baby story, NICU brain injury, medical dad perspective, parenting child with disabilities, pediatric brain injury journey, adaptive products for kids, inclusive design children, youth crews diapers, special needs parenting support, early intervention services, disability advocacy parenting, medically complex child parenting, child life support tools

Preparing Your Child for Surgery: A Pediatric ENT Surgeon's Honest Advice25 Mar 202600:44:53

How do you prepare a child for surgery and build trust with their medical team? This episode explores how families and healthcare providers can work together to support children through procedures like tonsillectomy and other medical challenges.

This week's guest, Dr. Tali Lando, shares her perspective as a pediatric ENT surgeon, author, and mom of three teenage daughters. She and Katie discuss what it's really like for families navigating medical care with complex kids and how parents can advocate effectively while still building strong partnerships with their child's care team.

If you've ever wondered how to build trust with your child's doctor, prepare your child for surgery, or understand the perspective of the people caring for your child, this episode offers meaningful insight and reassurance. Dr. Lando's message is clear: the best outcomes happen when families and providers work together as partners.

We extend our sincere gratitude to our sponsor for this episode, Gebauer PainEase®. We are pleased to provide more information about this product, and we invite you to learn more by visiting their website.

Resources & Ways to Connect:

Book: Breathless: Surgical Tales from the Brink and Back By Dr. Tali Lando

 Available on Amazon

Website 

Instagram

Connect with us! 

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

Keywords: pediatric ENT surgeon, tonsillectomy preparation for kids, preparing children for surgery, pediatric airway specialist, parenting medically complex children, doctor-patient partnership, advocating for your child in healthcare, pediatric surgery preparation, airway disorders in children, Breathless Dr. Tali Lando, medical memoir pediatric surgeon, supporting families in pediatric healthcare

 

Life After Pediatric Kidney Transplant: A Mom's Journey Through Dialysis, Surgery, and Recovery18 Mar 202600:41:25

What does life really look like after a child receives a kidney transplant? Many people think transplant is the end of the journey—but for families, it's often just the beginning.

This week's guest, Lyndsey Fedorko, returns to the podcast to share the next chapter of her son James's medical journey—life after a kidney transplant. After years of dialysis, hospitalizations, and uncertainty, James received a life-saving kidney transplant from his aunt, marking the beginning of a new season for their family.

Lyndsey and Katie reflect on the intense months surrounding transplant surgery, including relocating their family to Houston, navigating the transplant workup process, and the emotional weight of waiting while two surgeries—donor and recipient—happened at the same time. Lyndsey shares what recovery really looked like, from the long hospital stay caused by a rare complication to the daily routines required to protect James's new kidney.

Lyndsey shares openly about the ongoing care James still needs, including medications, monitoring for rejection, therapies, and the unexpected challenges that came after transplant—including a rejection episode that required intensive treatments.

If you've ever wondered what life after pediatric transplant truly looks like, this conversation offers an honest and hopeful look at resilience, advocacy, and the power of family support.

We extend our sincere gratitude to our sponsor for this episode, Gebauer PainEase®. We are pleased to provide more information about this product, and we invite you to learn more by visiting their website.

Resources & Ways to Connect:

Connect with Lyndsey

Children's Transplant Initiative
Provides housing and support for families traveling for pediatric transplant care.

IROC (Improving Renal Outcomes Collaborative)- Support and Educational Resources for families navigating pediatirc Kidney Transplants

Connect with us! 

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

Keywords: pediatric kidney transplant, life after transplant child, dialysis in children, kidney disease in kids, transplant rejection treatment, pediatric transplant recovery, living donor kidney transplant, children's transplant initiative housing, transplant parent story, caring for medically complex child, pediatric kidney failure journey, transplant family support, child life coping tools, parenting through pediatric illness.

Healing After the NICU: Processing Trauma, Loss, and Your Family's Story11 Mar 202600:39:02

This week's guests, perinatal mental health therapists Emily Souder and Mahaley Patel, share the story behind their book Your NICU Story: Reflecting on Your Family's Experience—a guided journal created to help families process the emotional impact of a NICU stay. Mahaley also opens up about her daughter, Sachi, who died after a NICU stay, and how storytelling and narrative healing became a lifeline in her grief.

She and Emily talk with Katie about why so many NICU parents carry trauma long after discharge and how writing your story can help families reconnect with what they experienced. They also discuss the emotional weight of making medical decisions during a NICU stay, the importance of compassionate healthcare providers, and why healing sometimes begins months or even years later.

If you've ever struggled to process a NICU experience—or wondered how to revisit it in a way that feels safe and meaningful—this conversation offers powerful insight and hope. Emily and Mahaley's biggest message? Your story deserves space, compassion, and time—and reflecting on it can be an important step toward healing.

We extend our sincere gratitude to our sponsor for this episode, Gebauer PainEase®. We are pleased to provide more information about this product, and we invite you to learn more by visiting their website.

Resources & Ways to Connect:

Book: Your NICU Story: Reflecting on Your Family's Experience
Available wherever books are sold, including Amazon, Barnes & Noble, and local bookstores.

Emily Souder, LMFT, PMH-C

Website 

Instagram

Mahaley Patel, LMFT, PMH-C

Instagram

Connect & Support from Child Life On Call:

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

 

Keywords: NICU trauma, healing after NICU, NICU parent mental health, NICU journaling prompts, birth trauma support, NICU loss support, perinatal mental health therapist, processing NICU experience, life after NICU discharge, NICU storytelling, guided journal for NICU parents, neonatal intensive care support, grief after NICU, NICU parent resources

 

Trust, Grief, and Loving Your Child Through Big Identity Changes04 Mar 202600:34:08

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

    • 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.

 

Connect & Support from Child Life On Call:

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

 

Helping Kids Navigate Physical Differences: Child Life Strategies for Confidence, Curiosity & Resilience25 Feb 202600:31:58

How do you help a child respond when someone asks about a scar, burn, or limb difference?

This week's guest, Abby Horton, opens up about her journey as a Child Life Specialist working across ICU, burn, surgical, rehab, and inpatient settings—and how those experiences shaped the way she supports families navigating physical differences. From sudden trauma and accidents to limb differences, burn injuries, surgical scars, and hair loss from chemotherapy, Abby shares how parents can gently empower their children to own their story with confidence.

She and Katie discuss simple, age-appropriate scripts that help children respond to questions about their bodies. Abby explains why modeling these conversations early matters, how to give kids space to answer for themselves, and why curiosity from peers is often just that—curiosity, not cruelty.

If you've ever wondered how to help your child respond to stares, questions, or comments about a physical difference, this conversation offers practical tools and deep reassurance. Abby's biggest message? You're probably doing better than you think—and it's not about having perfect words, but about helping your child feel loved and supported.

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 & Ways to Connect:

Website: Little Lighthouses Child Life Services
Instagram: @littlelighthouseschildlife

Abby offers virtual support for families navigating physical differences, medical transitions, and post-hospital adjustment.

Connect & Support from Child Life On Call:

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

 

Keywords: physical differences in children, limb difference support, burn survivor child, surgical scars in kids, hair loss from chemotherapy, child life specialist, five cent story, five dollar story, resilience in children, bullying vs curiosity, parenting medically complex child, body confidence in kids, hospital to home transition, psychosocial support for families, sibling advocacy, Little Lighthouses Child Life

Micro Preemie at 25 Weeks: A NICU Mom's Journey18 Feb 202600:43:09

This week's guest opens up about the shock of an emergency C-section at 25 weeks and 3 days, the fear of entering the NICU for the first time, and the powerful role Child Life Specialists played in supporting not only Vincent, but their entire family, including his older brother. She reflects on what helped her cope during long NICU days, how she advocated for herself using her healthcare background, and what she wishes she had known about the "medically complex" label sooner.

This episode explores sibling bonding in the NICU, the impact of a truly integrated care team, the importance of addressing social determinants of health, and how resilience can grow in the smallest of patients. Anna's story is a beautiful reminder that families may not remember every name—but they will always remember how they were made to feel.

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 Mentioned Today's Episode:

Connect with Anna:
Anna is open to connecting with other NICU families—please email us at podcast@childlifeoncall.com if you would like to connect with her!

Connect & Support from Child Life On Call:

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

Keywords: micro preemie, NICU journey, 25 week preemie, medically complex child, chronic lung disease in children, antepartum hospitalization, emergency C-section, sibling support in NICU, child life specialist, Ronald McDonald House, Hand to Hold, March of Dimes, NICU discharge, parenting after the NICU, medical motherhood, resilience in children, premature birth support, Midwest NICU mom

Tube Feeding Awareness: Lived Experience, Real Talk, and Hope for the Future11 Feb 202600:45:37

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:

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:

 

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.

How Camp Supports Healing, Play, and Belonging for Medically Complex Kids04 Feb 202600:41:18

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:

 Connect & Support from Child Life On Call 


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

 

Rare Lung Disease, Epilepsy and the Diagnostic Journey28 Jan 202600:49:28

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:

Nonprofit & Community Support:

 Connect with Brittany

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

 

 Connect & Support from Child Life On Call 

 

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

 

Severe Hemophilia: A Newborn, A Brain Bleed, and PICU Experience21 Jan 202600:33:42

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.

Resources

Connect with Sami

 Connect & Support from Child Life On Call 

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 Insurance Isn't Enough: A Parent's Type 1 Diabetes Story14 Jan 202600:56:46

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.

Resources  Connect & Support

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.



New Diagnosis: What to Do When Your Child Gets Diagnosed07 Jan 202600:21:10

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

 

Welcome to Inside the Children's Hospital: What Listeners Can Expect01 Jan 202600:01:31

If your child is facing a diagnosis, procedure, or hospitalization — you're not alone.

Inside the Children's Hospital brings you real stories from parents who've walked this path. Not medical advice, but the kind of honest conversation you need when you're scared, exhausted, and looking for someone who gets it.

I'm Katie Taylor, a Certified Child Life Specialist with 15 years supporting families through hard moments in pediatric healthcare.

On this podcast, I interview caregivers who share what it's really like — the sleepless nights, the uncertainty, the small victories, the moments that break you and the ones that keep you going. You'll find yourself nodding along, regardless of your child's specific diagnosis.

These are true lived experiences that remind you: other parents have felt this too, and there are ways through.

Subscribe to find:

→ Stories from parents who understand

→ Practical coping strategies that have actually worked for families

→ Reassurance that what you're feeling is normal 

→ Community when you need it most

This isn't a clinical lecture — it's parents talking to parents, with a child life specialist helping translate the experience. You're here because something hard brought you here. I'm glad you found us.

🎙️ New episodes every Wednesday

🌐 More resources: childlifeoncall.com and 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.

3 Proven Strategies for Parents Navigating Pediatric Healthcare in 202518 Dec 202500:13:52

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

⭐ Leave a review on Apple Podcasts or Spotify—your feedback helps us reach more families!

A Father's Journey Through Loss, Healing, and the Birth of a Rainbow Baby: Jeff's Story10 Dec 202500:54:16

In this profoundly moving and honest conversation, we sit down with Jeff Loving, a NICU dad, husband, and now an author, who shares the intimate and often unspoken grief experienced by fathers after pregnancy loss. Jeff walks us through the heartbreaking loss of his two sons, Davian and Jadon, the struggle to find empathy and appropriate medical care, and how these experiences ultimately led him and his wife, Cassie, to become fierce advocates for their future family. This episode is a raw look at marriage under immense stress, the importance of empathetic medical staff, and the redemptive joy of welcoming their "double rainbow" daughter, Isla Grace. Jeff also discusses his mission to help other men through their grief by writing his book, Holding Onto the Light.

Key Discussion Points & Timestamps

Time

Topic

Key Takeaway

00:06

Meet Jeff Loving: Husband, NICU Dad, and Author

Jeff introduces his family, including his dog, Sage, his wife, Cassie, and their NICU "double rainbow" baby girl, Isla Grace, reflecting on five years of marriage and three pregnancies.

01:08

The Loss of Davian (First Pregnancy)

Jeff describes the initial shock and excitement of their first pregnancy, the sudden onset of symptoms at 19 weeks, and the devastating choice they faced in the hospital due to an infection: lose the baby, or risk losing both the baby and his wife.

04:55

The Cruel Disconnect of Grief

Jeff recounts the soul-crushing moment of holding his son, Davian, as his heartbeat stopped. He shares the struggle of navigating intense grief while the world—and Thanksgiving—kept moving around them.

07:58

Finding Support: The Power of Presence

The discussion turns to how his family supported them by simply being present, rather than offering platitudes like "it's God's plan." The importance of showing up for grieving parents is highlighted.

11:21

Empathetic vs. Detached Care

Jeff praises the nurses who were a "calming presence in the chaos" and later attended Davian's service. Conversely, he shares a painful anecdote about a male doctor's detached and jovial demeanor, asking if he wanted to cut the cord after the loss.

15:51

What Compassion Looks Like in Care

Jeff shares what he wished the doctor had said: "I know this is very hard... just know that my heart breaks for you, and I'm so sorry that you guys are going through this." This is a vital lesson for medical professionals.

16:55

Marriage Under Stress

After moving to North Carolina for a fresh start, Jeff discusses how the loss put their marriage under extreme stress—it would either break them or bond them deeper. They emerged stronger.

23:13

The Loss of Jadon (The Second Pregnancy)

The traumatic situation repeats almost day-for-day with their second son, Jadon. Jeff details the medical system's failure to provide a cerclage procedure, despite repeated requests, and the resulting emergency.

26:45

The Audacity of Poor Communication

Jeff recounts being livid when the doctor who denied them the preventive cerclage entered the room without him present to tell his wife they were losing their baby, and then left without speaking to Jeff.

34:20

The Blessing of Angel the Bereavement Coordinator

Jeff shares the incredible support they received from their bereavement coordinator, Angel, who handled every detail from handprints to selecting clothes, even providing a moment of much-needed humor when she accidentally gave Jadon a hilarious nickname.

36:02

Remembrance Toys: Dino Dave and Jucletus

The significance of tangible remembrance items, like a weighted dinosaur (Dino Dave) and a heartbeat bear (Jucletus), that allow Isla to connect with her "big brothers."

39:18

"This is Our Double Rainbow Child"

Jeff discusses the difficulty of answering "Is this your first?" as a parent of loss, and how he now confidently speaks of Isla as their "double rainbow child."

42:03

A Resource for Fathers of Loss

Jeff explains his motivation for writing his book, Holding Onto the Light: A Father's Journey Through Loss and Healing. He notes the lack of resources for grieving men and how he encapsulated real stories into a fictional narrative to help them feel seen and heard.

46:05

The Defining Moment

The most powerful feedback: a man who hadn't read a book in a decade finally read Jeff's book after losing his son.

48:52

Where to Find the Book and Connect

Jeff shares his book title, where to buy it, and the dedicated email address to build a community of grieving fathers.

Action Items & Connect with Jeff

Read Jeff's Book:

  • Title: Holding Onto the Light: A Father's Journey Through Loss and Healing

  • Author: J. S. Loving

  • Available: On Amazon (print and Kindle Unlimited).

Connect & Share Your Story:

  • Fathers of Loss Email: holdingontothelightbook@gmail.com (Jeff's goal is to connect with other fathers and collect stories for a future project).

Instagram: @L-O-V-I-J-E-F (L-O-V-I-J-E-F)

 

When parents feel empowered, everyone wins – kids thrive and the care team excels!

Links and Resources:

  • 85% of users report high satisfaction, appreciating the SupportSpot app's comprehensive resources and user-friendly interface.
  • 92%  of parent users say the SupportSpot app's helped them understand medical procedures and treatment better.
  • 80% of parents believe the SupportSpot app's has contributed to better health outcomes for their child.
  • 73% of parent users believe the SupportSpot app's has made them feel more empowered to advocate for their child in healthcare

Learn more here.

Meet the host: 

Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.

Instagram.com/childlifeoncall

 

The Child Life On Call 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.

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

 

Understanding Homocystinuria (HCU): How one Mother Uncovered her Son's Diagnosis03 Dec 202500:40:30

Melanie, mom to 12-year-old Masen, shares the unexpected path to her son's diagnosis with Homocystinuria (HCU) after a routine eye exam revealed something "off." What followed was months of uncertainty, a rare diagnosis few providers had even heard of, a crash course in low-protein diets and metabolic formulas, and two back-to-back eye surgeries to prevent further damage. With gentleness, honesty, and deep advocacy, Melanie describes how they adjusted as a family, how Masen built resilience, and how finding community changed everything. A story of early detection, parent intuition, and the power of connection.

Why this episode matters

Rare disease reality: What it feels like to navigate a diagnosis most clinicians have never seen

Caregiver intuition: How a parent's sense that "something isn't right" can spark life-saving action

Practical communication: Age-appropriate ways to explain health changes, procedures & dietary needs

Health equity & systems gaps: When newborn screening misses what should have been caught

Hope forward: The resilience of kids—and the strength families build together

What You'll Learn
  • Early signs Masen showed (or didn't show) before diagnosis

  • How a routine eye exam led to life-changing discoveries

  • What HCU is, and why newborn screening only catches ~50% of cases

  • How metabolic diets work—and why the formula is so hard for kids

  • Talking to kids about scary changes in simple, honest language

  • Navigating back-to-back eye surgeries

  • How parents balance their own needs while supporting their child

  • Building resilience without expecting perfection

  • The power of community: conferences, meetups, Facebook groups

  • Advocating for improved newborn screening for future families

Timestamps

00:00 Meet Melanie & Masen: family intro, life in Vancouver
01:23 Sports, hockey, and life surrounded by nature
01:56 Routine eye exam → the moment everything changed
03:38 The optometrist's concerns & the start of uncertainty
04:01 Google panic, calling providers, needing answers
04:55 Keeping fears private during COVID
07:38 Mother's Day call: the rare diagnosis finally revealed
07:47 What HCU is and why newborn screening misses it
10:45 Treatment basics: low protein & metabolic formula
11:19 Explaining diagnosis to an eight-year-old
13:14 Parenting through fear while staying regulated
14:52 "Eat the prawns in the pantry"—navigating food changes
17:29 Building resilience while validating hard feelings
18:31 Finding community online & through HCU conferences
20:41 Masen meets other kids with HCU
22:33 Advocacy: improving newborn screening across Canada
24:28 Social media vs. real-life progress
24:58 Masen's eye surgeries & long-term vision care
27:46 What parents can request if concerned about HCU
30:22 Trusting your care team & staying curious
30:51 Who Masen is beyond a diagnosis
34:22 Where to learn more about HCU

Melanie shares that…
  • "My heart was racing. I knew something was off."

  • "Most doctors have never even heard of HCU."

  • "The formula tastes terrible, but it keeps him healthy."

  • "You can be proud of your child's resilience and still wish they didn't need it."

  • "This should have been caught at birth—we want to change that for future kids."

Resources & Links HCU & Metabolic Disorder Communities SupportSpot App (by Child Life On Call)

Procedure guides, coping plans, journals, and parent resources to help families feel prepared and advocate with confidence.

 Learn more here.

Meet the host: 

Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.

Instagram.com/childlifeoncall

 

The Child Life On Call 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.

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

 

Autism, Advocacy and the Power of a Medical ID Bracelet19 Nov 202500:58:14

Tara Cohen opens up about her son Will's autism diagnosis and how it transformed her family and career. From navigating meltdowns to discovering AAC as a communication lifeline, Tara shares her honest reflections on parenting, resilience, and hope. What began as a search for a medical ID bracelet led to a career at Lauren's Hope—where she now helps other families feel safe and supported. This heartfelt episode reminds caregivers that advocacy grows from love and that even small acts of compassion can make a life-changing difference.

 Timestamps

  • 00:00 – Introduction

  • 03:10 – Early diagnosis and emotions

  • 07:45 – Advocacy and ESE Pre-K

  • 12:30 – Discovering Lauren's Hope

  • 18:40 – Communication with AAC

  • 25:15 – Managing epilepsy

  • 31:00 – Finding silver linings

  • 37:00 – Advice for caregivers

Resources Mentioned Child Life On Call Resources

Level up your parent toolkit with child life–expert guidance:
👉 Get SupportSpot on the App Store

Want to hear insights from our host, Katie Taylor, Certified Child Life Specialist?

👉Subscribe to Katie's Substack

Interested in being a guest or learning more about the podcast? Email us at podcast@childlifeoncall.com

When parents feel empowered, everyone wins – kids thrive and the care team excels!

Links and Resources:

  • 85% of users report high satisfaction, appreciating the SupportSpot app's comprehensive resources and user-friendly interface.
  • 92%  of parent users say the SupportSpot app's helped them understand medical procedures and treatment better.
  • 80% of parents believe the SupportSpot app's has contributed to better health outcomes for their child.
  • 73% of parent users believe the SupportSpot app's has made them feel more empowered to advocate for their child in healthcare

Learn more here.

Meet the host: 

Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.

Instagram.com/childlifeoncall

 

The Child Life On Call 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.

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

 

When Your Baby is Diagnosed with Type 1 Diabetes: Marlee's Story12 Nov 202500:33:54

"My baby went from fussy to lifeless in hours—by the time we reached the PICU, they said he might have had six hours to live."


In this episode, TikTok Influencer and Medical Mom Marlee Brandon, a pediatric speech-language pathologist turned full-time mom, shares the whirlwind diagnosis of her 12-month-old son Bain with Type 1 diabetes and severe DKA, the traumatic hospital stay, and the everyday advocacy that followed. Raw, practical, and deeply hopeful.

Why this episode matters
  • Emotional clarity: what a Type 1 diagnosis really feels like in infancy

  • Practical advocacy: scripts, choices, and language that help toddlers cope

  • System gaps: when even major hospitals say "we've never seen this in a baby"

  • Hope forward: raising a confident kid who knows why care matters

What You'll Learn
  • Early signs & ER visit: how "ear infection" symptoms masked T1D in a baby

  • DKA in plain language: what "acidic blood" means and how PICU treats it

  • The learning cliff: carb ratios, breastfeeding while dosing insulin, and why it's OK not to "get it" on day one

  • Toddler coping: give choices, narrate care, build independence

  • Rebuilding trust after mistakes: when training/tools aren't perfect

  • Finding your people: groups, podcasts, and creators who answer "what now?"

Timestamps
  • 00:00 Meet Marlee (pediatric SLP → motherhood)

  • 01:40 Why speech therapy & pediatrics

  • 03:55 Bain turns one → sudden "ear infection" → nonstop vomiting

  • 06:30 Small-town ER: "He has diabetes" (dismantling stereotypes)

  • 08:35 Life-flight & PICU: severe DKA, hourly sticks, no food for 48 hrs

  • 10:20 Turning the corner: energy returns; the six-hour window

  • 11:22 "I don't understand this"—carb ratios, nursing, overwhelm

  • 13:05 "We've never seen this in a baby" at a major children's hospital

  • 15:23 Tears → handing tasks to partner → first solo shot

  • 17:20 The Chick-fil-A moment: necessity builds confidence

  • 18:44 Finding community: Facebook groups, YouTube, TikTok

  • 19:55 Narrating care for toddlers—SLP tools that build trust & language

  • 21:19 Offering choices: stickers, shot sites, pushing the button

  • 22:53 Caregiver reality: self-care with very young T1D

  • 24:32 Why daycare felt unsafe: syringe mix-ups & trust

  • 25:54 Joy check: rocks, crafts, and a kid excited by everything

  • 27:56 Best resources for newly diagnosed families

  • 29:52 "Diabetes doesn't define your life."

Marlee Shares that...
  • "Type 1 isn't about weight or diet—my baby was still nursing."

  • "They told my husband he probably had six hours to live."

  • "I thought I needed nursing school to understand our endo."

  • "I won't chase him with a shot. I explain why—insulin keeps you safe."

  • "You can be anything and do anything…and have diabetes."

Resources & Links
Brain Surgery for Drug-Resistant Epilepsy: Managing Infantile Spasms05 Nov 202500:46:14

Join us for an incredibly candid and informative conversation with Audrey Vernick, a passionate advocate and the Director of Patient and Family Advocacy for the Pediatric Epilepsy Surgery Alliance. Audrey shares the powerful 21-year journey of her son, Bennett, who suffered a stroke in utero and was later diagnosed with the catastrophic epilepsy known as Infantile Spasms.

Audrey recounts the emotional process from the difficult labor and early concerns dismissed as normal reflexes, to the terrifying moment she saw his MRI and realized half of his brain was black due to a massive stroke.

This episode is an essential listen for any parent navigating a serious pediatric diagnosis, especially those dealing with seizures. Audrey shares her family's ultimate decision to pursue a hemispherectomy after two years of failed medications, and the immediate, miraculous developmental explosion in her son's language and physical abilities post-surgery.

Key Takeaways and Actionable Advice
  • Trust Your Parental Instinct: If you think something is wrong with your child's movements, something probably is.
  • Demand a Specialist: If you suspect Infantile Spasms, go to the ER and demand to speak to a neurologist or epileptologist. Request video EEG monitoring.

  • Video & Log Everything: Record videos of suspicious movements and log details (time, duration, what you observed) to help clinicians with diagnosis and treatment planning.

  • The Difference Between a Consult and Surgery: A surgical consult is not a surgery. Referring for a pre-surgical workup opens up a new toolbox of solutions and gives you access to a world-renowned team of specialists for a more detailed look at your child's case.

  • Drug-Resistant Epilepsy (DRE): Epilepsy is considered DRE if a child has uncontrolled seizures after appropriately failing two seizure medications. This increases the risk of SUDEP (Sudden Unexplained Death due to Epilepsy).

  • Decision-Making: Understanding your partner's decision-making style is crucial when navigating complex medical choices.

Guest Information & Resources
  • Guest: Audrey Vernick, Director of Patient and Family Advocacy at the Pediatric Epilepsy Surgery Alliance.

  • Organization: Pediatric Epilepsy Surgery Alliance

    • Website: epilepsysurgeryalliance.org.

    • Resources: Offers a Parent Support Navigator Program (trained peers), financial aid for travel to a Level Four epilepsy center for pre-surgical workups, webinars, and more.

  • Infantile Spasms Resource: Audrey also mentions the Infantile Spasms Action Network for resources on recognizing and acting on infantile spasms.

 

Time Stamp

Description

Key Information

00:00:43

Critical Advice: Surgery Consult vs. Surgery

Audrey shares the core message that a surgery consult is different than a surgery, and there is no harm in seeking a consultation for any diagnosis.

00:01:54

Bennett's Diagnosis and Surgery

Audrey introduces her son, Bennett (21), who had a stroke in utero, infantile spasms, and ultimately a hemispherectomy.

00:04:50

The Early Months: Colic vs. Seizures

Audrey describes the first five months, where unusual movements and fussiness were initially dismissed as normal reflexes and colic by her pediatrician.

00:12:08

Emergency EEG & Stroke Discovery

The night she called a new neurologist, they were admitted for a 48-hour video EEG monitoring. The next day, an MRI revealed a massive stroke in the right hemisphere.

00:14:50

Infantile Spasms: Recognize the Signs

Audrey, as a leader of the PESA, stresses that Infantile Spasms is a medical emergency. She describes the signs: head drop/nod, flexing, and subtle movements that happen in clusters.

00:17:10

Advocacy: How to Get Help

Advice for parents: Take videos, take logs, and at the ER, demand to see a neurologist or epileptologist.

00:22:15

The Surgical Seed is Planted

Bennett's first neurologist mentioned a hemispherectomy when he was only five months old, which her husband immediately dismissed, but planted a "seed" for future research.

00:24:09

Choosing Surgery and the "Elmo Song" Miracle

The family begged for surgery and two days later Bennett had his hemispherectomy. Two weeks later on the plane home, Bennett, whose speech was suppressed, sang the entire Elmo song, signaling the impact the seizures had been having.

00:30:52

Defining Drug-Resistant Epilepsy (DRE)

DRE is when a child has seizures after failing two appropriately dosed medications. DRE is harmful to development and carries the highest risk of SUDEP (Sudden Unexplained Death due to Epilepsy).

00:42:55

Final Message: Trust Yourself

Audrey's final, powerful advice to parents: You are the expert in your own child; trust yourself and use that expertise as a tool on your journey.

 

Support the Host & Show

If you found value in this conversation, please check out host Katie Taylor's work and community resources:

  • Join Katie Taylor's Substack for in-depth insights and articles: Join here

  • Get the SupportSpot App—a helpful tool to support your child through their healthcare journey: Check it out

The Child Life On Call 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 is 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.



 

Speech Therapy at Home: Expert Tips to Help Your Child Communicate29 Oct 202500:29:20

"The excitement that the kids feel when they are seeing you... and they know today's session with Ms. Luba and they can't wait to see you." - Luba Kaplan

When a child enters the medical system, parents often meet many specialists beyond doctors and nurses, including Speech-Language Pathologists (SLP). These professionals are vital members of the healthcare team, doing more than just helping with speech. SLPs, as Luba Kaplan explains, also explains how they look at every area of the child's development to ensure children are being fully supported.

In this episode, we introduce Luba Kaplan, a passionate SLP, Oral Myofunction Therapist, and mother of three who is the visionary behind Kidology. Celebrating 10 years in private practice, Luba has made it her mission to bridge gaps in access to therapy. She even created the Therapy Bus—a half-size school bus that travels to families who can't leave home or have transportation issues.

About Our Guest: Luba Kaplan, SLP

Luba Kaplan is a Speech-Language Pathologist and Oral Myofunction Therapist. As the founder and owner of Kidology, she has built a practice that offers a multidisciplinary, team approach to therapy, including Speech, Occupational, Physical, and Behavioral services. Luba is driven by a deep passion for helping families achieve change and is dedicated to cancer research in honor of her mother, Angela, who worked in oncology research for 25 years.

Luba on Social Media:

Key SLP Insights for Medical Parents

Luba shares crucial advice for working effectively with a Speech-Language Pathologist:

  • Build Strong Rapport: Share everything that is going on in your child's life, even seemingly small struggles like a supermarket meltdown. The more the provider knows, the more they can help.

  • Look for a Global Approach: Seek a provider who utilizes a multidisciplinary, team approach and is willing to screen for or refer to other needed services (OT, PT, behavioral services).

  • Early Intervention is Key: Don't wait or assume your child will simply "grow out of it.". Addressing issues sooner, not later, can put your child ahead.

  • Ensure Family Alignment: Everyone in the child's life (parents, grandparents, etc.) must be on the same page with the therapy goals to ensure the proper foundation for progress. Otherwise, therapy won't work.

  • Trust the Independent Session: While parental presence is key in a hospital setting, giving your child space to learn independently in a non-threatening environment allows them to develop their own voice and thrive with the therapist.

  • Stay Committed: Stick with the therapy program even when you think your child is "okay". Commitment is essential for your child to be better off post-program.

 

Episode Timeline Highlights
  • 00:00: Introduction to the role of a Speech-Language Pathologist.

  • 01:00: Introducing Luba Kaplan, the visionary behind Kidology and the innovative Therapy Bus.

  • 02:30: Luba's passion for change and her personal connection to cancer research.

  • 06:00: Tips for parents on finding an impactful provider and the necessity of sharing full history.

  • 09:30: Navigating the system and the need for a team approach in therapy.

  • 11:00: Strategies for carryover at home: portals, homework, and getting the whole family on the same page.

  • 15:45: The difference between presence in an acute trauma setting (hospital) vs. a non-threatening environment (therapy clinic).

  • 19:30: The growth of Kidology: from one suburban office to two central clinics with play gyms.

  • 22:00: Final takeaways: the importance of commitment and not delaying intervention.

Support Our Host & Show

Child life specialists are experts who help families navigate the overwhelming and confusing world of healthcare. Now, you can access these valuable tools and resources outside of the hospital setting through the SupportSpot App.

Parents, get empowered! The SupportSpot App provides tools to:

  • Understand and explain medical procedures to your child.

  • Help your child feel less anxious.

  • Feel informed and confident in your child's healthcare journey

Join Katie Taylor's Substack for in-depth insights and articles: Join here

Child Life Specialists- join the circle. There is a seat here for you to recieve support, professional development, and access to clinical supervision. 

 

🌟 Special Thank You for Our Listeners! 🎉

We're giving you free access to our most popular pediatric masterclasses — How to Prepare, Support, and Respond to Your Child During Shots, Blood Draws, and Vaccines and How to Use Comfort Positioning in Pediatrics — a $250 value, completely free! All you have to do is leave a written review of the Child Life On Call podcast on Apple Podcasts or Spotify, then email a screenshot of your review to podcast@childlifeoncall.com. Once we receive it, you'll get instant access to both courses — no strings attached. It's our way of saying thank you for listening and helping more parents discover our show. 💛

The Child Life On Call 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 is 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 provide

Type 1 Diabetes: Finding Community and Humor After Diagnosis22 Oct 202500:35:44

When Stacey's toddler was diagnosed with Type 1 diabetes, her family's world turned upside down. In this episode, she shares the early warning signs, the struggle of those first two weeks of injections, and how humor and community turned fear into resilience. Parents will gain hope, advocacy tips, and coping strategies for managing a chronic illness diagnosis.

 What You'll Hear
  • How Stacey recognized the 4 Ts of diabetes: Thirsty, Tired, Thinner, Toilet

  • The reality of hospitalization, finger sticks, and injections with a toddler

  • Coping strategies: medical play, humor, and routines that work

  • The power of community and rejecting "perfect parenting"

  • Building advocacy through Diabetes Connections and The World's Worst Diabetes Mom

About Stacey

Stacey Simms is an award-winning broadcaster, speaker, and author of The World's Worst Diabetes Mom. Since 2015, she has hosted Diabetes Connections, offering real stories and resources for the Type 1 community.

🔗 Diabetes Connections
🔗 Instagram @staceysimms

Key Takeaways
  • Advocate for more than a finger stick when symptoms appear

  • Medical play & humor ease children's anxiety about procedures

  • There's no "perfect parent"—safe and happy is enough

  • Community matters, but it's okay to choose your people wisely

Timestamps

00:00 – Introduction & Stacey's background
02:00 – Early signs of Type 1 diabetes (the 4 Ts)
06:00 – Hospital stay and first injections
10:00 – The hardest two weeks: shots, tears, and routine
15:00 – Teaching kids about diabetes as they grow
18:00 – Humor, medical play, and coping strategies
22:00 – Building Diabetes Connections & Moms' Night Out
25:00 – Lessons Stacey learned about herself
27:00 – The myth of perfect parenting

 

Support the Host & Show

If you found value in this conversation, please check out host Katie Taylor's work and community resources:

  • Join Katie Taylor's Substack for in-depth insights and articles: Join here

  • Get the SupportSpot App—a helpful tool to support your child through their healthcare journey: Check it out

  • Listen & Subscribe! 

 

🌟 Special Thank You for Our Listeners! 🎉

We're giving you free access to our most popular pediatric masterclasses — How to Prepare, Support, and Respond to Your Child During Shots, Blood Draws, and Vaccines and How to Use Comfort Positioning in Pediatrics — a $250 value, completely free! All you have to do is leave a written review of the Child Life On Call podcast on Apple Podcasts or Spotify, then email a screenshot of your review to podcast@childlifeoncall.com. Once we receive it, you'll get instant access to both courses — no strings attached. It's our way of saying thank you for listening and helping more parents discover our show. 💛

The Child Life On Call 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 is 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.

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