Épisodes

  • Rare Lung Disease, Epilepsy and the Diagnostic Journey

    Rare Lung Disease, Epilepsy and the Diagnostic Journey
    Jan 28 2026

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

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

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

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

    Resources from today's episode:

    Medical Support:

    • Stanford Children's Health
    • Undiagnosed Diseases Network

    Nonprofit & Community Support:

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

    Connect with Brittany

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

    Connect & Support from Child Life On Call

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

    • Visit insidethechildrenshospital.com to easily search stories and episodes

    • Follow us on Instagram for updates and opportunities to connect with other parents

    • Download SupportSpot: receive Child Life tools at your fingertips.

    • Leave a Review: It helps other families find us and access our resources!

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

    Medical information provided is not a substitute for professional advice—please consult your care team
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    49 min
  • Severe Hemophilia: A Newborn, A Brain Bleed, and PICU Experience

    Severe Hemophilia: A Newborn, A Brain Bleed, and PICU Experience
    Jan 21 2026

    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

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

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

    Connect with Sami

    • Follow Sami and Cooper's journey on Instagram

    Connect & Support from Child Life On Call

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

    • Visit insidethechildrenshospital.com to easily search stories and episodes

    • Follow us on Instagram for updates and opportunities to connect with other parents

    • Download SupportSpot: receive Child Life tools at your fingertips.

    • Leave a Review: It helps other families find us and access our resources!

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

    Medical information provided is not a substitute for professional advice—please consult your care team.
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    34 min
  • When Insurance Isn't Enough: A Parent's Type 1 Diabetes Story

    When Insurance Isn't Enough: A Parent's Type 1 Diabetes Story
    Jan 14 2026

    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

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

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

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

    • Connect with Alicia directly

    Connect & Support

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

    • Visit insidethechildrenshospital.com to easily search stories and episodes

    • Follow us on Instagram for updates and opportunities to connect with other parents

    • Download SupportSpot: receive Child Life tools at your fingertips.

    • Leave a Review: It helps other families find us and access our resources!

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

    Keywords: Type 1 Diabetes, T1D diagnosis, HealthWell Foundation, pediatric healthcare, medical financial assistance, insulin costs, child life specialist, diabetes symptoms in kids, middle class healthcare help, medical debt, Dexcom, Omnipod, childhood chronic illness, parenting a diabetic child, Sanford Childrens Hospital, co-pay assistance, pediatric grants, medical parenting, T1D symptoms, diabetes advocate.
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    57 min
  • New Diagnosis: What to Do When Your Child Gets Diagnosed

    New Diagnosis: What to Do When Your Child Gets Diagnosed
    Jan 7 2026

    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
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    21 min
  • Launching Inside the Children's Hospital: What Listeners Can Expect

    Launching Inside the Children's Hospital: What Listeners Can Expect
    Jan 1 2026

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

    Listen to more stories at insidethechildrenshospital.com.

    Medical Legal Disclaimer: This podcast is for informational purposes only and does not constitute medical advice. Always consult your healthcare provider for guidance about your child's health.
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    5 min
  • 3 Proven Strategies for Parents Navigating Pediatric Healthcare in 2025

    3 Proven Strategies for Parents Navigating Pediatric Healthcare in 2025
    Dec 18 2025

    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!
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    14 min
  • A Father's Journey Through Loss, Healing, and the Birth of a Rainbow Baby: Jeff's Story

    A Father's Journey Through Loss, Healing, and the Birth of a Rainbow Baby: Jeff's Story
    Dec 10 2025
    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 ...
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    54 min
  • Understanding Homocystinuria (HCU): How one Mother Uncovered her Son's Diagnosis

    Understanding Homocystinuria (HCU): How one Mother Uncovered her Son's Diagnosis
    Dec 3 2025
    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 HCU Network America (Instagram: @hcunetwork_america) CANPKU+ (Instagram: @canadian.pku) 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 ...
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    41 min