Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
Stories, Hope, Healing and Help for Parents Navigating Illness and Healthcare with Their Children *Top 15% Globally Ranked Podcast* Katie Taylor has been a child life specialist for almost 15 years and has one mission: to ensure that any parent who has a child with medical needs has access to other parents who have walked through the path before. With over 200+ diagnoses covered in this podcast, Katie interviews parents of children with an illness or medical condition share their stories in safe, supportive discussions with a child life specialist. Navigating life with a child who is sick can feel isolating, and this podcast offers parents a sense of connection. Hosted by Katie Taylor, a Certified Child Life Specialist who provides evidence-based, developmentally appropriate interventions to help promote positive coping with hospitalization and illness.
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When Your Baby is Diagnosed with Type 1 Diabetes: Marlee's Story
11/12/2025
When Your Baby is Diagnosed with Type 1 Diabetes: Marlee's Story
“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 , 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 Support communities Diapers & Diabetes () J Related Child Life On Call resources (by Child Life On Call) Procedure guides, coping plans, journals, and parent resources to feel prepared and advocate with confidence
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Surgery for Pediatric Drug-Resistant Epilepsy and Infantile Spasms (278) - Audrey's Story
11/05/2025
Surgery for Pediatric Drug-Resistant Epilepsy and Infantile Spasms (278) - Audrey's Story
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: Get the SupportSpot App—a helpful tool to support your child through their healthcare journey: 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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A Speech Language Pathologist's Tips to Helping Your Child Thrive (277)-Luba's Story
10/29/2025
A Speech Language Pathologist's Tips to Helping Your Child Thrive (277)-Luba's Story
"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: , , : @KidologyInc (KIDOLOGYINC) YouTube Channel: 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 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: Child Life Specialists- . 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
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From Early Diagnosis to the Power of Community and Humor in Type 1 Diabetes (276)- Stacey's Story
10/22/2025
From Early Diagnosis to the Power of Community and Humor in Type 1 Diabetes (276)- Stacey's Story
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 Th Since 2015, she has hosted Diabetes Connections, offering real stories and resources for the Type 1 community. 🔗 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: Get the SupportSpot App—a helpful tool to support your child through their healthcare journey: 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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NICU, Down syndrome and Infant Loss: A Grief Story and Children's Book( 275) - Teejay + Jon's Story
10/15/2025
NICU, Down syndrome and Infant Loss: A Grief Story and Children's Book( 275) - Teejay + Jon's Story
In this incredibly personal and moving episode, we sit down with Teejay and Jon, the authors of the gentle children's book , to share the full, raw story of their daughter, Nadiya. Their journey began with an unexpected connection—a transatlantic online romance between Teejay in Australia and Jon in Canada—that quickly turned into a marriage grounded in a shared life and purpose. With Teejay's extensive background in early childhood development and their experience fostering a young man with Down syndrome, they felt prepared when Nadiya was diagnosed with Trisomy 21 (Down syndrome) early in the pregnancy. However, Nadiya's complications were severe: a complete AVSD (Atrioventricular Septal Defect), a heart condition that made survival a constant battle. Teejay and Jon open up about the grueling reality of Nadiya’s three-month, extended NICU stay. They speak candidly about the sheer exhaustion, the mental toll of the incessant alarms and machine noise, and the profound isolation of making life-and-death decisions under unimaginable pressure. We explore the difficult but necessary truth of grieving alongside a partner who processes loss in a completely different way. Jon, an extrovert, sought normalcy and company, while Teejay, an introvert, needed space and quiet isolation. They explain how establishing mutual respect and seeking professional counseling were the key foundations that saved their marriage during this seismic time. Finally, they share the powerful mission behind their book, . Written to honor Nadiya's memory, it provides a crucial tool for families, helping them talk to children about baby sibling loss. They reveal plans for a sequel to address the unique grief of the "neglected mourners"—the subsequent children born after a loss who never met their older sibling. This conversation is an essential listen for anyone in the NICU community, processing loss, or seeking resources for pediatric grief support. Note: We recognize this episode addresses Infant and Pregnancy Loss Awareness. We stand with all families who have experienced loss and hope this conversation brings comfort and community. Episode Highlights & Timestamps Time Topic 00:05:48 Nadiya’s Diagnosis: Trisomy 21 and the severe complete AVSD Heart Condition. 00:07:07 The NICU Reality: Coping with the three-month extended stay and constant medical crisis. 00:11:05 Profound Kindness: The stranger's DoorDash order that helped them survive the crisis. 00:13:28 Nadiya's Spirit: Her curiosity, determination, and "badass" personality that charmed the nurses. 00:22:10 Grief in Marriage: Navigating different coping styles (Introvert vs. Extrovert) to stay together. 00:24:25 What Helps? The power of presence and what to say (and what NOT to say) to grieving parents. 00:30:46 A Continuing Legacy: Writing the sequel for Clemence to support subsequent siblings. Connect & Resources : You can find their children's grief book, Clemence, available on [, , , and all major book retailers]. Support & Grief Resources: For additional support and resources mentioned in the episode, please visit: 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: Find community and support with the SupportSpot App (a helpful resource for organizing and receiving support during difficult times): 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. 💛 Disclaimer: The content of this podcast is for informational purposes only. The host and guests are not licensed therapists or medical doctors. Always consult with your child’s qualified medical professional for advice specific to your family’s situation.
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US News Children's Hospital Rankings 2025: Why the BEST Outcomes Demand the Human Touch (with Ben Harder)
10/07/2025
US News Children's Hospital Rankings 2025: Why the BEST Outcomes Demand the Human Touch (with Ben Harder)
Is the "best" hospital just about technology and surgical success? Ben Harder, the journalist who oversees the methodology and data for the U.S. News Best Children's Hospitals Rankings (2025), joins Katie to break down what truly defines quality in pediatric care. Ben shares his deeply personal family story—a tragedy 50 years in the past that drives his commitment to making data-driven information accessible today. This episode is a crucial guide for parents, explaining the three core pillars of the rankings: structure/resources, processes of care, and patient outcomes. We dive into why essential human-focused services like Child Life Specialists, chaplains, and family advisory boards are included in the scorecard and how they influence the rankings. Ben illuminates the challenge faced by these vital "cost centers" in a revenue-driven healthcare system, and offers a powerful message: parents are the strongest possible advocates for their children, and they should use every resource available—including the U.S. News data—to make informed, collaborative choices for their child’s care team. Guest Links U.S. News Best Children's Hospitals Rankings: All data is freely available for families to research hospitals by region and specialty. Episode Highlights & Key Takeaways The Personal Motivation: Ben shares the heartbreaking story of his cousin, whose permanent brain injury after a heart surgery complication 50 years ago lacked the complete care team needed to ensure a good outcome—a void the U.S. News data is designed to fill today. The Three Pillars of Ranking: US News analyzes over 1,000 data points grouped into: 1) Resources/Structure (nurses, expertise, technology, child life services), 2) Processes of Care (following best practices, infection control), and 3) Outcomes (survival, length of stay, quality of life). The Honor Roll: The 2025 Honor Roll features the top 10 hospitals recognized for high performance across multiple specialties, including: Boston Children's Hospital, The Children's Hospital of Philadelphia (CHOP), Cincinnati Children's, Texas Children's Hospital, and others. A Piece of the Puzzle: The rankings are one resource to use alongside insurance coverage, , and most importantly, consulting your child's doctors and trusting your parental intuition. The Value of Human Support: Services like Child Life Specialists, support groups, and family advisory boards are included in the structural data points, serving as a motivator for hospitals to invest in comprehensive, family-centered care. Advocacy is Essential: Ben gives parents permission to advocate relentlessly, reminding them they know their child best. Collaborating with—not simply questioning—the care team can be life-saving. Chapters: Timestamp Topic 0:00 Ben Harder’s Personal Connection to Hospital Rankings 1:03 The Official Launch of the U.S. News Best Children's Hospitals 2025 3:20 US News Honor Roll: The Top 10 Children's Hospitals 4:26 FREE COURSE Ad: Shots, Blood Draws & Comfort Positioning 5:35 Meet Ben Harder: Journalist, Father, and Best Hospitals Lead 7:59 The 3 Pillars of US News Ranking Methodology (1000+ Data Points) 11:37 The Role of Expert Work Groups in Defining Data 13:58 The Future of Family Expertise in Shaping Rankings 16:59 How Families Should Use the U.S. News Rankings 21:09 Why Child Life Services and Support Resources Matter in Rankings 25:12 Why Support Services are Overlooked: Revenue vs. Cost Centers 27:54 Ben Harder's Personal Story: The Tragic Need for Comprehensive Care 31:00 The Efficacy and Impact of Child Life Specialists 34:36 What Families Should Expect and Ask For: Advocacy Permission 38:23 Where to Find the U.S. News Best Children's Hospitals Rankings 38:58 Disclaimer Resources for You 1. Unlock Two FREE Courses (Value $250+) We want to equip you to better support your child during medical experiences! Get our popular courses "How to Prepare, Support, and Respond to Your Child During Shots, Blood Draws, and Vaccines" AND "How to Use Comfort Positioning in Pediatrics" completely free. How to Get It: Leave a written review for the Child Life On Call podcast on Apple Podcasts or Spotify. Take a quick screenshot of your submitted review. Email the screenshot to: podcast@childlifeoncall.com 2. Connect with Child Life On Call Website: Instagram: Disclaimer: The content of this podcast is for informational purposes only. The host and guests are not licensed therapists or medical doctors. Always consult with your child’s qualified medical professional for advice specific to your family’s situation.
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A Heart Transplant Survivor Helps Her Son Face His Own: Danon’s Disease (273) – Brittany's Story
10/01/2025
A Heart Transplant Survivor Helps Her Son Face His Own: Danon’s Disease (273) – Brittany's Story
Psychologist and heart-transplant recipient Dr. Brittany Clayborne shares how her own medical journey prepared her to guide her son Micah through sudden heart failure, an LVAD, and a life-saving transplant. She unpacks the family’s rare Danon’s disease diagnosis, post-transplant cancer (PTLD), and the everyday realities after transplant—meds, setbacks, and hope. You’ll learn Dr. Brittany’s BRAVE framework for hard moments, how rituals sustain connection during long hospital stays, and how Micah turned his experience into action with Transplant Teens and My Brave Journal. This conversation is packed with concrete tools, compassion, and the reminder that “hope is a team sport.” You do not want to miss this week's episode. Featured moments: 00:00 — Why families need “somewhere to be brave.” 04:50 — Brittany’s peripartum cardiomyopathy, ICU wait, and LVAD. 10:05 — PTLD diagnosis and becoming the psychologist she needed. 12:50 — Micah’s chest pain → HCM crisis and transplant path. 24:00 — The BRAVE acronym families can use today. 44:00 — “Hope is a team sport.” Transplant Teens' vision. Key takeaways: Use BRAVE in tough conversations: Breathe • Realize feelings • Accept them • Vent/Vulnerable with a trusted person • Elevate above it. Build predictable touchpoints (calls/visits) to anchor kids during long hospitalizations. Teens heal better with peers; if the group doesn’t exist yet, create it. Resources mentioned: Contact Dr. Brittany: 📲 Get Support Support your child with step-by-step tips from certified child life specialists. 🌟 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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How a Bone Marrow Transplant Cured her daugther’s Sickle Cell Anemia (272)-Maite's Story
09/24/2025
How a Bone Marrow Transplant Cured her daugther’s Sickle Cell Anemia (272)-Maite's Story
In this episode of Child Life On Call, guest Maite Rodriguez shares her daughter Alessia’s inspiring journey with sickle cell disease (SCD)—from diagnosis at birth and painful crises to finding a cure through a pediatric bone marrow transplant at Memorial Sloan Kettering. Maite discusses the challenges of long-term treatments like hydroxyurea, the emotional toll of hospitalizations, and her family’s decision to pursue IVF to create a genetic match. She also introduces her bilingual children’s book, , which helps families explain sickle cell to children, siblings, and communities. ⏱️ Episode Timestamps 00:05 – Newborn diagnosis and the first sickle cell pain crisis 09:00 – Daily medications: penicillin, folic acid, and hydroxyurea 20:00 – How advocacy, research, and community support make a difference 25:00 – Considering a cure: bone marrow transplant and IVF journey 31:00 – Why Memorial Sloan Kettering was chosen for Alessia’s transplant 41:00 – Life after transplant: cured of sickle cell, dancing in the rain 48:00 – Writing Just Like the Moon, a bilingual sickle cell book for kids 📚 Resources Mentioned , a book written by Maite Rodriguez – Resources & Advocacy – family lodging during hospital care 📲 Get Support Support your child with step-by-step tips from certified child life specialists. 👉 Download the SupportSpot app (iOS & Android) 🌟 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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How One Mom Navigated her daughter’s Severe Food Allergies (271)- Susanna's Story
09/17/2025
How One Mom Navigated her daughter’s Severe Food Allergies (271)- Susanna's Story
From “colic” that never eased to four pages of confirmed allergens, Susanna Peace Lovell recounts the first years of parenting her daughter, Arizona—years marked by nonstop crying, full-body eczema, and relentless advocacy. When a hypoallergenic formula finally brought relief around 18–19 months, Susanna could breathe—and begin reframing motherhood with compassion for her child and herself. She shares practical allergy survival tips (from table toppers to EpiPens), how autism diagnosis informed self-advocacy, and why community through We Are Brave Together mattered. This conversation serves as a guidepost for any parent navigating complex medical needs while preserving joy at home. You won’t want to miss Katie and Susanna’s conversation. Episode Timestamps: [03:45] Signs of Severe Food Allergies in Infants – From nonstop crying to full-body eczema, Susanna shares the earliest symptoms Arizona showed. [08:15] How Doctors Diagnosed Multiple Severe Food Allergies – The long journey to four pages of allergy results and what that meant for daily life. [18:30] Switching to Hypoallergenic Formula – How finding the right formula finally brought relief after months of suffering. [22:45] Tips for Parents Navigating Severe Food Allergies – Compassion, picky eating strategies, and surviving dining out with kids. [26:50] Teaching Kids Self-Advocacy with Food Allergies – How Arizona learned to protect herself and why autism shaped that process. [30:40] Finding Support for Parents of Kids with Severe Allergies – The role of We Are Brave Together and community in surviving medical parenthood. Resources mentioned: (caregiver community Jessica Patay founded). 🎉 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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Empowering Parents Through Play-Based Physical Therapy (270)- Allison's Story
09/10/2025
Empowering Parents Through Play-Based Physical Therapy (270)- Allison's Story
In this episode, Dr. Allison Mell—pediatric PT and founder of Tots on Target—breaks down how therapy for kids doesn’t have to feel overwhelming. She shares real talk about what progress actually looks like, why play is so powerful, and how parents can weave therapy into everyday life without adding stress. From NICU graduates to toddlers finding their stride, Allison reminds us that tiny wins build up to big milestones. Her approachable, down-to-earth advice helps parents feel supported, capable, and ready to advocate for their child’s needs. Resources mentioned: Tots on Target Website Tots on Target Instagram Page 🎉 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 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. Keywords: pediatric physical therapy, Tots on Target, Dr. Allison Mell, child development milestones, medically complex children, parent advocacy, play-based therapy, NICU graduates, torticollis, comfort positioning, early intervention, family-centered care, Child Life On Call
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From Anxiety to Answers: a journey to a PANDAS diagnosis (269)- Camryn's Story
09/03/2025
From Anxiety to Answers: a journey to a PANDAS diagnosis (269)- Camryn's Story
When Camryn’s fearless 4-year-old suddenly became anxious, her gut said something deeper was wrong. Multiple “all clear” evaluations followed—until a post-virus crash at age 6 that led to a diagnosis under the PANS/PANDAS umbrella (autoimmune encephalitis). Camryn shares how a steadfast pediatrician, early referrals, and balancing clinical guidance with peer support helped her daughter reclaim everyday life—right down to summer swim league. She also opens up about protecting her child’s privacy, supporting siblings, starting trauma therapy, and building margin for joy. This is a masterclass in parental advocacy, nervous-system care, and creating a trusted circle around your child. Y Resources mentioned (national Facebook community) — peer support and practical tips. (clinical education & navigation for PANS/PANDAS). — anonymous Q&A platform for moms (Camryn is co-founder). School-based supports (counselor, principal, buddy programs) for siblings. 🎉 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 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. Keywords PANDAS, PANS, autoimmune encephalitis, pediatric anxiety, OCD in kids, basal ganglia inflammation, post-strep, family advocacy, sibling support, pediatrician partnership, trauma therapy, child life, SupportSpot, MomBrain, Austin families
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A daughter with Down Syndrome, AVSD and Pulmonary Hypertension [REPOST] (268)- Courtney's Story
08/27/2025
A daughter with Down Syndrome, AVSD and Pulmonary Hypertension [REPOST] (268)- Courtney's Story
In this reposted episode, Courtney shares her journey of receiving her daughter Annie’s Trisomy 21 diagnosis, navigating the NICU, and walking through open-heart surgery complicated by pulmonary hypertension. She talks about the power of community, the unexpected strength she discovered in herself, and how vulnerability and advocacy have shaped her motherhood. Courtney reminds us that love, connection, and collective wisdom can carry families through the hardest seasons while celebrating Annie’s resilient and joyful spirit. Resources mentioned in this episode: – A resource hub for parents and caregivers Follow Courtney on Read Courtney's most about how the Annie Louise Foundation helped with Central Texas Flood relief in Kerrville, TX 🎉 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. 💛 Keywords: Down Syndrome, Trisomy 21, congenital heart defect, VSD, pulmonary hypertension, NICU, ECMO, parent advocacy, child life, Spoony Threads, SupportSpot 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.
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A Tuberous Sclerosis Complex Diagnosis and Finding Strength in Vulnerability (267)- Erin's Story
08/20/2025
A Tuberous Sclerosis Complex Diagnosis and Finding Strength in Vulnerability (267)- Erin's Story
Tuberous Sclerosis Complex, epilepsy in children, and autism parenting—in this powerful episode, women’s health coach and mom of four, Erin Trier, shares her family’s eight-year journey to finally receiving a TSC diagnosis for her son, Brendan. She talks about the early seizures, navigating a rare genetic disorder, and managing the added challenges of autism and uncontrolled epilepsy. Erin opens up about the emotional and mental toll, the power of vulnerability, and the practical organization systems that help her family thrive—including her genius laundry strategy. She also shares why self-care, community connection, and support are essential for parents raising a medically complex child. You will not want to miss this episode. Resources Mentioned: Erin’s website: www.erintrier.com Instagram Podcast: Empowered in Health 🎉 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. 💛 Keywords: Tuberous Sclerosis Complex, TSC diagnosis story, rare genetic disorder, seizure disorder, epilepsy in children, autism parenting, medically complex child, women’s health coach, parenting tips, self-care for parents, family organization, SupportSpot app, parent mental health, coping strategies, special needs parenting, rare disease awareness. 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.
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Nursing and Motherhood After a Prenatal Diagnosis of Achondroplasia (266)- Victoria’s Story
08/13/2025
Nursing and Motherhood After a Prenatal Diagnosis of Achondroplasia (266)- Victoria’s Story
Victoria Garcia—lovingly known as “Nurse Vic”—shares her powerful journey as a nurse and mom of two, including her daughter Julia, who was diagnosed with achondroplasia during pregnancy. In this heartfelt episode, Victoria opens up about the emotional and logistical challenges of navigating a rare diagnosis while working at the very hospital where she received the news. She talks about the strength she found in community, the importance of informed advocacy, and what it truly means to be in alignment with your purpose. 🎧 This is an inspiring listen for any parent facing a diagnosis or anyone who supports families in medical settings. Resources Mentioned: Victoria’s landing page: For Parents & Caregivers: Bring Child Life Home With You The SupportSpot app puts expert child life tools, coping strategies, and emotional support right in the palm of your hand—anytime you need it. 🛒 Available now in the App Store → Support your child through medical moments with the same guidance used by hospitals across the country. For Child Life Specialists: Join The Child Life Circle A community for certified child life specialists that blends connection, professional growth, and collaboration. 🌐 Learn more or join now → The Circle is where child life professionals come together for real talk, resources, and rejuvenation. 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. Keywords: Achondroplasia, skeletal dysplasia, dwarfism, rare diagnosis, nurse mom, pediatric advocacy, parenting journey, postpartum, SupportSpot, Child Life On Call, Nurse Vic, community support, early diagnosis, medical parenting
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A Mother-Daughter Journey Through Crohn’s Disease, Storytelling, and Advocacy (265)- Quinn + Kirby's Story
08/06/2025
A Mother-Daughter Journey Through Crohn’s Disease, Storytelling, and Advocacy (265)- Quinn + Kirby's Story
In this moving and hope-filled episode, mother-daughter duo Quinn Wyatt and Kirby Larson share the deeply personal story behind their middle grade novel, Gut Reaction. Diagnosed with Crohn’s disease as a teen after years of being dismissed, Quinn opens up about her experience living with a misunderstood chronic illness. Kirby, an acclaimed author, reveals what it took to revisit this painful chapter of their lives and co-write a book that helps kids feel seen. Together, they explore diagnosis delays, self-advocacy, parenting through illness, and how their storytelling became a form of healing and community connection. Resources Mentioned: Crohn’s & Colitis Foundation – Learn more: For Parents & Caregivers: Bring Child Life Home With You The SupportSpot app puts expert child life tools, coping strategies, and emotional support right in the palm of your hand—anytime you need it. 🛒 Available now in the App Store → Support your child through medical moments with the same guidance used by hospitals across the country. For Child Life Specialists: Join The Child Life Circle A community for certified child life specialists that blends connection, professional growth, and collaboration. 🌐 Learn more or join now → The Circle is where child life professionals come together for real talk, resources, and rejuvenation. Keywords: Crohn's disease, chronic illness in kids, middle grade books, parent advocacy, child life, invisible illness, IBD, Camp Oasis, Kirby Larson, Gut Reaction book, diagnosis journey, storytelling therapy, chronic illness support, medical parenting, Child Life On Call Podcast 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.
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An Unexpected Diagnosis at 22 Months: Infantile Spasms and Advocacy [REPOST] (264)-Kate's Story
07/30/2025
An Unexpected Diagnosis at 22 Months: Infantile Spasms and Advocacy [REPOST] (264)-Kate's Story
“What started as a terrifying diagnosis became a mission to help other families feel seen, supported, and brave.” – Kate, founder of Brave Bears Club In this reposted and newly updated episode, we revisit Kate’s emotional and empowering story as she shares her daughter Charlotte’s unexpected diagnosis of infantile spasms (IS) at 22 months old. What began as a terrifying medical journey transformed into an advocacy movement—Brave Bears Club—that now supports children with pediatric epilepsy around the world. Kate reflects on the early signs of IS, how her instincts as a mom led to a critical diagnosis, and what life has looked like navigating treatments, therapies, and the unknown. You'll also hear how she turned her experience into tangible tools of hope: an inclusive children’s book and EEG comfort bear to prepare kids for their medical experiences. Key Takeaways: ✅ Learn the early warning signs of infantile spasms ✅ Hear how Kate coped while pregnant with her second child ✅ Understand the emotional rollercoaster of IS treatment ✅ Discover how play and preparation inspired the Brave Bears Club ✅ Get practical advice from a parent-turned-advocate Timestamps: [03:00] Meet Kate: From Massachusetts to Colorado and back again [04:00] Diagnosis during pregnancy: Receiving life-changing news at 8 months pregnant [06:00] Trusting her mom instinct and the challenge of being dismissed [08:00] What to watch for: Rhythmic, involuntary movements and why video is essential [11:30] Comparing IS to SIDS awareness and the need for change [15:00] Two-thirds of kids don’t respond to first treatments—Kate’s road to success [18:30] Creating the book: Helping Charlotte and others understand IS [25:00] Turning fear into empowerment through play and preparation [30:00] Where to find the book and stay updated on Brave Bears Club 🧸 Resources from Kate: Follow on Instagram: Share This Episode If you know a parent, grandparent, or pediatric care provider who is navigating infantile spasms and seizures—please share Kate's story. It’s a powerful reminder that no one is alone in this journey. A single message or text could offer the hope and strength someone needs right now. 📩 Copy this episode link and share it in your support group, hospital team chat, or parenting forum. More Ways to Stay Connected & Supported Whether you’re a parent, caregiver, or pediatric professional—we have something just for you: For Parents & Caregivers: Bring Child Life Home With You The SupportSpot app puts expert child life tools, coping strategies, and emotional support right in the palm of your hand—anytime you need it. 🛒 Available now in the App Store → Support your child through medical moments with the same guidance used by hospitals across the country. For Child Life Specialists: Join The Child Life Circle A community for certified child life specialists that blends connection, professional growth, and collaboration. 🌐 Learn more or join now → The Circle is where child life professionals come together for real talk, resources, and rejuvenation. 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.
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From Bedside Nursing to Butterfly Pig: A Mission to Reduce Pediatric Medical Trauma Through Play (263)-Mary’s Story
07/23/2025
From Bedside Nursing to Butterfly Pig: A Mission to Reduce Pediatric Medical Trauma Through Play (263)-Mary’s Story
“The tears legitimately just turned to curiosity—and she wanted to play.” – Mary Jenner, BSN and Founder of the Butterfly Pig Meet Mary, a former pediatric oncology nurse turned full-time entrepreneur and founder of The Butterfly Pig. In this heartfelt episode, Mary opens up about how play transformed her bedside care, her daughter’s unexpected NICU stay due to HIE, and how she’s now helping families and clinicians reduce pediatric medical trauma through imaginative medical play tools. Listen in to discover how Mary's passion is revolutionizing how we empower kids and parents in healthcare. 🔑 What You’ll Learn in This Episode ✅ What HIE is and how Mary’s family navigated the NICU ✅ How realistic medical play toys reduce trauma and increase confidence ✅ The power of parents in pediatric care and preparation ✅ How nurses and child life specialists can use play more effectively ✅ How Mary’s business blends creativity, compassion, and advocacy 🕰️ Episode Highlights & Timestamps [00:00] Introduction [01:00] From Nurse to Entrepreneur: Mary’s Journey [03:00] The Butterfly Pig Mission & Empowering Parents [06:00] Mary's NICU Experience with Her Daughter's HIE Diagnosis [07:00] How Play Changed a NICU Visit [11:00] Play as a Parenting Tool in Medical Moments [13:00] Misconceptions in Medical Play – Letting Kids Lead [16:00] From Fear to Confidence: A HLHS Echo Story [17:00] Mary’s Bedside Story That Sparked It All [19:00] Building a Business That Defies Expectations [20:00] The Meaning Behind “The Butterfly Pig” [23:00] Getting Started with Medical Play at Home [25:00] Final Reflections and Gratitude 🌐 Guest Resources & Links Website: Instagram: Email: mary@thebutterflypig.com 📣 Share This Episode Know a parent navigating their child's diagnosis, a pediatric nurse, or child life specialist? This episode is a must-listen. One story can inspire hope, connection, and powerful play to help normalize medical treatments and procedures. 💛 For Parents & Caregivers: Bring Child Life Home With You The SupportSpot app puts expert child life tools, coping strategies, and emotional support right in the palm of your hand—anytime you need it. 🛒 Available now in the App Store → Support your child through medical moments with the same guidance used by hospitals across the country. 👩⚕️ For Child Life Specialists: Join The Child Life Circle A community for certified child life specialists that blends connection, professional growth, and collaboration. 🌐 Learn more or join now → The Circle is where child life professionals come together for real talk, resources, and rejuvenation. 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.
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"Can You Invite Her In?" — A NICU Story: Healing & Advocacy [REPOST] (262)- Tanisha's Story
07/16/2025
"Can You Invite Her In?" — A NICU Story: Healing & Advocacy [REPOST] (262)- Tanisha's Story
“I was pumping in the NICU, feeling completely disconnected—and my husband looked at me and said, ‘Can you invite her in?’ That moment changed everything. A nurse handed me a swab, I gave my baby colostrum for the first time, and I thought, ‘I’m a mommy.’” – Tanisha NICU mom and advocate Tanisha shares her deeply moving journey through an unexpected fetal diagnosis, a 157-day NICU stay, and the powerful moments that helped her reconnect with motherhood. Diagnosed at 20 weeks with Lower Urinary Tract Obstruction (LUTO)—a rare, life-threatening condition—Tanisha’s son Jaleel faced impossible odds. From transferring care to Cincinnati Children’s Hospital, navigating in-utero surgery, to forming a life-saving care team that included her husband and child life specialists, Tanisha’s voice is a beacon of strength, love, and resilience. 💛 Whether you're a NICU parent, pediatric provider, or anyone seeking a story of courage and connection—this episode is for you. 💛 Tanisha is a member of the Child Life On Call Parent Adivsory Council. 🔑 What You’ll Learn in This Episode Rare Diagnosis & Brave Decisions: The emotional impact of receiving a LUTO diagnosis at 20 weeks. Choosing Hope: Why Tanisha traveled to Cincinnati for specialized in-utero care. The NICU Rollercoaster: The grief, disconnection, and eventual empowerment she found during her son's 157-day stay. The Power of Support: How a nurse’s gesture and her husband’s quiet advocacy brought her back to herself. Creating Community: The birth of Medical Moms of NICU, a thriving support space for NICU moms everywhere. 🕰️ Episode Highlights & Timestamps [00:01] Meet Tanisha Introductions and the early motherhood journey with three kids, including a medically complex son. [06:00] The LUTO Diagnosis Processing a devastating and rare prenatal diagnosis—and the impossible choices that followed. [13:00] Choosing Cincinnati Children’s Why hearing “Cincinnati” changed everything and led to life-saving care. [23:00] The Turning Point in the NICU A swab, a nurse’s guidance, and a husband’s quiet wisdom helped Tanisha reclaim motherhood. [30:00] Support Systems in Action How child life specialists and her “Daddy Doula” partner brought healing and hope. [38:00] Post-NICU Life Dialysis at home, G-tubes, and transforming their house into a place of healing—not a hospital. [44:00] A Mission to Uplift NICU Moms Founding Medical Moms of NICU to provide the community she once longed for. [47:00] Meet Jaleel Get to know the joyful, musical, and vibrant little boy who continues to thrive. 🌐 Resources & Ways to Connect Join the Community 👉 – A private space offering support, self-care, and connection. Follow Tanisha on Instagram 👉 Tanisha's Book Reccomendation Tanisha's Podcast 💬 Share This Episode If you know a NICU parent, grandparent, or pediatric care provider—please share Tanisha’s story. It’s a powerful reminder that no one is alone in this journey. A single message or text could offer the hope and strength someone needs right now. 📩 Copy this episode link and share it in your support group, hospital team chat, or parenting forum. 📲 More Ways to Stay Connected & Supported Whether you’re a parent, caregiver, or pediatric professional—we have something just for you: 💛 For Parents & Caregivers: Bring Child Life Home With You The SupportSpot app puts expert child life tools, coping strategies, and emotional support right in the palm of your hand—anytime you need it. 🛒 Available now in the App Store → Support your child through medical moments with the same guidance used by hospitals across the country. 👩⚕️ For Child Life Specialists: Join The Child Life Circle A community for certified child life specialists that blends connection, professional growth, and collaboration. 🌐 Learn more or join now → The Circle is where child life professionals come together for real talk, resources, and rejuvenation. 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.
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How to Talk with Kids About Disasters, Illness, and Other Tough Topics
07/09/2025
How to Talk with Kids About Disasters, Illness, and Other Tough Topics
In the wake of recent flooding in Central Texas, Katie Taylor—child life specialist and mom—pauses the regularly scheduled episode to speak directly to parents navigating uncertainty and grief. Whether you're facing a natural disaster, a scary news event, illness, or another tough moment, Katie offers a compassionate and practical framework to help guide difficult conversations with your child. Drawing from both her professional experience and personal moments with her own daughter, Katie walks you through a 5-step process to ensure these talks are grounded in safety, emotional connection, and honest, age-appropriate communication. Questions, media or collaborations? Reach out to us at hello@childlifeoncall.com What You’ll Learn in This Episode: Why regulating yourself is the first step to supporting your child How to assess what your child knows or believes about an event (and correct misconceptions) Strategies for explaining complex topics in clear, simple ways How to validate emotional reactions, even when you don’t have all the answers The importance of ending with a bonding activity to reinforce connection and security Katie’s 5-Step Framework: Regulate yourself Assess what your child knows Explain complex information simply Validate their emotions and responses Close with connection and bonding 🤝 Resources Mentioned: 🔗 Child Life Disaster Relief (CLDR) – Supporting families and professionals during crisis situations: 📚 Flooding & Crisis Resource Hub for Parents and CCLS: [00:00] – Welcome & why this episode matters right now (Texas flooding) [01:00] – The emotional toll on parents and the importance of self-regulation [02:00] – Personal reflection: Katie shares how she coped this weekend [03:00] – Step 1: Why regulating yourself is step one in helping your child [04:00] – Step 2: Two ways tough conversations begin (reactive vs. planned) [05:00] – Creating a safe environment: timing, tone, and physical comfort [06:00] – Step 3: Assessing what your child knows and clearing up misconceptions [07:00] – Example: When Katie’s daughter feared the pool would flood their home [08:00] – How to explain complex topics like weather in simple, honest language [09:00] – Step 4: Reading your child’s cues and inviting collaboration [10:00] – When kids ask heartbreaking questions (e.g. “Did kids die?”) [11:00] – Validating your child’s emotions and offering honest responses [12:00] – Step 5: How to close the conversation with a bonding moment [13:00] – Simple ideas: drawing together, taking a walk, or reading a book [14:00] – What to do when you don’t have the answers to their questions [15:00] – Why the message of safety, love, and presence matters most [16:00] – Acknowledging the incredible work of Child Life Disaster Relief (CLDR) [17:00] – Where to find resources: [18:00] – Final encouragement: You can do this—and your words matter less than your presence
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When your Child is Diagnosed with Leukemia: Wisdom from a Cancer Parent (260)- Laura's Story
06/25/2025
When your Child is Diagnosed with Leukemia: Wisdom from a Cancer Parent (260)- Laura's Story
When Laura's daughter was diagnosed with leukemia, her world stopped. What followed was a powerful journey through fear, resilience, and fierce advocacy. In this episode, Laura DeKraker Lang-Ree—a lifelong educator and now author of The Cancer Parent’s Handbook—opens up about the most terrifying day of her life, how she transformed pain into purpose, and why parent-to-parent support is critical in the childhood cancer community. Her reflections are raw, heartfelt, and offer wisdom for every parent facing a medical diagnosis with their child. 🗝️ 5 Key Topics in This Episode: Diagnosis day & emotional impact Finding empowerment through peer support Practical coping strategies for parents Giving kids agency during treatment Long-term reflection, gratitude & growth ⏱️ Timestamps with Details: 00:00] Introduction to Child Life On Call + meeting Laura Katie welcomes listeners and introduces Laura, an educator and mother of three, who shares her personal journey through her daughter’s cancer diagnosis. [02:00] Life before diagnosis and early warning signs Laura describes her daughter Cecilia’s vibrant personality and the subtle symptoms—like fatigue and pallor—that signaled something was wrong. [04:30] Diagnosis day: from classroom to clinic Laura recounts the moment she received the devastating call while teaching choir class and the whirlwind that followed as her daughter was diagnosed with leukemia. [06:30] The emotional toll and the beginning of advocacy Facing fear and uncertainty, Laura begins to advocate for her daughter’s care while navigating the shock and grief that comes with diagnosis. [07:45] Camp experience and the danger of living “in cancer” Laura reflects on a pivotal moment at a childhood cancer camp where she recognized the importance of not letting cancer define her family’s entire future. [09:00] Collaborating with doctors + writing the handbook Inspired by the gaps in communication, Laura begins collaborating with her care team and eventually writes The Cancer Parent’s Handbook to empower other families. [11:45] The moment she knew she had to advocate fiercely After a doctor’s offhand comment about potential cognitive decline, Laura took matters into her own hands and became a determined voice for her daughter’s future. [14:00] Giving children power during treatment Laura explains how offering simple choices helped her daughter feel more in control and less fearful during difficult medical procedures. [16:30] Coping skills and caring for the caregiver She shares the importance of self-care, setting boundaries, and creating a support system to survive the marathon of long-term treatment. [21:00] Practical ways to normalize medical trauma Through routines, honest conversations, and using Child Life services, Laura found ways to help her daughter feel safe and empowered during medical care. [26:00] Empowerment through routine and consistency By incorporating rituals like bike rides and post-procedure treats, Laura created a sense of predictability that helped her daughter manage weekly treatments. [28:00] The unexpected gifts of reflection and gratitude Laura opens up about how practices like gratitude journaling helped her find peace and moments of beauty during even the darkest days. [30:00] About The Cancer Parent’s Handbook + where to get it Laura shares her motivation for writing the book and how it’s now available for parents everywhere seeking guidance through their own childhood cancer journey. 📚 Resources from Laura: 🛒 Purchase the Cancer Parent Handbook 🌍 Follow the CancerParentHandbook on 🙌 Help Us Grow & Stay Connected If this episode touched your heart or helped you feel more prepared on your cancer parenting journey, we’d be so grateful if you could: 🌟 Rate and review the Child Life On Call Podcast on Apple Podcasts or Spotify — it helps more parents and professionals find these powerful stories. 🔔 Subscribe so you never miss an episode filled with guidance, support, and hope. 📲 Share this episode with someone who needs to hear it today. 🎈 For more resources on supporting children through medical experiences — including expert articles and downloadable tools — visit . 📲Download the SupportSpot App today for Child Life Tools in your pocket 🌟Interested in sharing your story? Reach out to Together, we’re making child life support more accessible to families everywhere. 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.
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Navigating Childhood Loss Through Storytelling (259)-B.R.'s Story
06/18/2025
Navigating Childhood Loss Through Storytelling (259)-B.R.'s Story
This episode is dedicated to Katie’s dear friend Joe, who recently passed away, leaving behind his wife and two young sons. Joe’s story reminds us to live in alignment with our purpose and to cherish the people we love. In this heartfelt episode of the Child Life On Call podcast, Katie Taylor speaks with B.R. Duray, an author, filmmaker, and storyteller whose debut children's book, The Mood Swing, is rooted in his experience of losing his father at the age of 10. With it being Father’s Day this past weekend, this conversation takes on even deeper meaning. B.R. shares how grief has shaped his creative life, the ways it resurfaces during important life moments, and how his book can help both children and adults find healing together. Whether you're a parent, a grieving adult, or a healthcare provider, this episode provides validation, comfort, and hope. 5 Key Takeaways from this Episode: ✅ Grief grants both pain and power B.R. explains how losing his dad gave him heightened emotional sensitivity and a creative voice to express and process those feelings. ✅ Grief resurfaces in different stages of life He shares how emotions from his childhood resurfaced 20 years later during his engagement, reinforcing that grief evolves with us. ✅ Reading about grief helps parents, too Though The Mood Swing was written for children, it often evokes emotional responses from adults who find healing in its message. ✅ The Mood Swing originated as a film The story began as a poem and animated concept, but eventually took form as a children’s book—and later inspired a short film. ✅ Parents can model healthy grief Katie and B.R. discuss how parents showing emotions in front of children teaches them it’s safe to feel and process grief together. 📍Episode Highlights: ⏱️ [3:00] – Katie dedicates the episode to her late friend Joe and reflects on how his life reminds us to live with purpose. ⏱️ [4:00] – B.R. shares how his father’s death shaped his creativity and opened his heart to telling meaningful stories. ⏱️ [10:30] – Discussion around how grief reemerges during milestones like engagements and weddings. ⏱️ [16:30] – The story behind The Mood Swing, how it began as a movie concept, and why B.R. shifted to a book format for a deeper connection. ⏱️ [22:00] – B.R. reflects on the emotional reactions he’s received from adults who have read The Mood Swing and how grief connects us all. ⏱️ [24:00] – Katie and B.R. talk about the importance of parents being open with their grief in front of children to foster healthy emotional expression. 📘 About The Mood Swing The Mood Swing follows Peter, a young boy navigating the highs and lows of emotion on a magical swing that helps him find balance through physical sensation and presence. Inspired by B.R.'s childhood grief, the book supports kids through big emotions without directly referencing death—making it a versatile tool for many types of emotional challenges. 🌐 Resources & Links from today’s episode: – View the book trailer, film, or donate a copy 📲 Stay Connected: Follow on Instagram Subscribe and leave us a review on your favorite podcast platform Share this episode with a friend, parent, or provider who needs it today 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.
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How a Nurse Practitioner Faced Her Daughter’s Tetralogy of Fallot Diagnosis (258)- Sarah's Story
06/11/2025
How a Nurse Practitioner Faced Her Daughter’s Tetralogy of Fallot Diagnosis (258)- Sarah's Story
We’d like to extend our sincere thanks to our episode sponsor, reStickity®. Their innovative, mess-free reusable sticker sets allow families to personalize hospital spaces with familiar photos and comforting images, helping bring a sense of home to the hospital. To learn more, visit and use code CLOC10 for an exclusive discount available to our listeners. In this inspiring episode, we meet Sarah Michelle Boes—nurse practitioner, entrepreneur, and mom to Meadow, who was diagnosed in utero with Tetralogy of Fallot and multiple congenital heart defects. Sarah brings a powerful trifecta of perspectives: as a medical provider, mental health advocate, and dedicated heart mom. We cover: ✅ Meadow’s life-saving heart surgeries and long ICU stays ✅ How Sarah navigated new motherhood with OCD and anxiety ✅ The emotional toll of being both a medical provider and a parent ✅ Creating a connection through medical play to ease doctor visits ✅ How Sarah turned survival into purpose through national advocacy Whether you're a fellow medical parent, healthcare provider, or mental health professional, this episode will leave you with real insight into the raw challenges and unexpected joys of raising a child with complex medical needs. Key Topics & Highlights [00:00] – Meet Sarah Michelle Boes Nurse practitioner, entrepreneur, and heart mom Her daughter Meadow’s surprise diagnosis of Tetralogy of Fallot at 36 weeks ⏱️ [03:00] – From Business Success to Medical Crisis Selling her business weeks before Meadow’s diagnosis The shock of learning Meadow had four heart defects ⏱️ [05:00] – Learning to Navigate as a Medical Parent How Sarah’s medical background helped (and complicated) her parenting Teaching her husband how to advocate medically alongside her ⏱️ [07:00] – Mother’s Intuition & Switching OBs Sarah felt something was wrong during pregnancy but was dismissed A new ultrasound revealed her daughter's heart looked “weird” ⏱️ [10:00] – NICU Rollercoaster Begins Meadow intubated within hours of birth due to medication side effect Sarah and her husband find strength in teamwork ⏱️ [14:00] – Advice for New Heart Parents The overwhelm of tracking vitals and data post-discharge Feeling more like Meadow’s nurse than her mom ⏱️ [17:00] – The Unexpected Second Surgery & Major Setbacks Meadow’s patch failed, requiring emergency open-heart surgery Her chest remained open for a week due to complications ⏱️ [21:00] – A Brain Bleed Diagnosis & Mental Health Spiral Sarah shares how uncertainty triggered her OCD Emotional trauma of seeing Meadow cold, still, and open-chested ⏱️ [25:00] – Living in the ICU Full-Time How Sarah and her husband made the hospital their home The benefits of being physically present 24/7 ⏱️ [28:00] – Discharge Shock & OCD Diagnosis Meadow is stable—but Sarah’s anxiety peaks post-discharge Diagnosed with OCD just 10 days after coming home ⏱️ [32:00] – Healing Through Gratitude & Giving Back Family vacation sparks the idea for a donation The heart institute is named in Meadow’s honor with a mural ⏱️ [36:00] – Sarah’s Ongoing CHD Advocacy Work Advocating for the Congenital Heart Futures Act Raising awareness for adult congenital cardiology and research needs ⏱️ [40:00] – The Power of Medical Play Meadow's echos improved after doing medical play at home Sarah incorporates play to help her daughter cope with appointments ⏱️ [43:00] – Reflections & Advice for Other Parents Learning how strong her partnership with her husband is Why having the right support person changes everything ⏱️ [45:00] – Where to Follow Sarah & Continue the Journey Website, LinkedIn, Instagram, and more Connect with Sarah Michelle Boes 📲 Website & Heart Mom Resources: 📷 Instagram: 💼 LinkedIn Community & Advocacy Writing: ❤️ Share This Episode Know a heart mom, Tetralogy of Fallot parent, or healthcare professional who supports families with congenital heart defects? Share Sarah’s courageous story to raise awareness, foster mental health advocacy, and connect families navigating similar journeys. 🧠 This episode also sheds light on the mental health challenges parents face—especially postpartum OCD—bringing compassion and visibility to an often-misunderstood diagnosis. 🎙️ Subscribe & Review: Help other heart families and caregivers discover this story by subscribing and leaving a review. 📩 Contact us: 🎧 Listen Now and Honor the Strength of Heart Moms Like Sarah #TetralogyOfFallot #HeartMom #CHDAwareness #OCDawareness #MaternalMentalHealth #ChildLifeOnCall #ParentingThroughCHD 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.
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The NICU Dad Experience: A father’s view from the NICU [REPOST] (257)-Alex’s Story
06/04/2025
The NICU Dad Experience: A father’s view from the NICU [REPOST] (257)-Alex’s Story
What happens when your world changes with a single phone call? In this powerful reposted episode, NICU dad and advocate Alex Zavala shares his emotional journey of fatherhood after his daughter was born at just 27 weeks. From the emergency C-section and NICU stay to the emotional toll of the "NICU dad shuffle," Alex opens up about the lesser-heard experience of dads navigating medical trauma, guilt, and resilience. As the host of the NICU Dad Podcast, Alex continues to amplify the voices of fathers facing similar experiences. This conversation is an essential listen for NICU families and healthcare professionals alike, reminding us of the often unseen emotional weight fathers carry and how vital their perspective is in family-centered care. Key Takeaways from this week’s episode: Premature birth can happen suddenly Fathers experience trauma too The “NICU dad shuffle” is real Life after the NICU is still challenging Community and storytelling are healing for fathers Timestamps & Key Topics [00:00] – Welcome & Episode Intro Alex’s story as a NICU dad begins with two premature daughters [04:00] – The NICU Numbers That Stay With You 27 weeks. 2 lbs. 5 oz. 67 days in the NICU—numbers you never forget [06:00] – A High-Risk Pregnancy & Sudden Crisis Despite a stable pregnancy, a 9:00 AM phone call changes everything [10:00] – The Emergency C-Section Racing to the hospital, trauma in the OR, and feeling helpless [15:00] – A Whirlwind of Fear & Responsibility Trying to stay strong for his wife and unborn child amid chaos [20:00] – The NICU Dad Shuffle Begins Managing hospital visits, home life, and caring for the rest of the family [27:00] – The Guilt of Having to Choose The emotional strain of not being able to be everywhere at once [33:00] – First NICU Visit & Early Trauma Walking into the NICU for the first time—alone, overwhelmed, and unsure [38:00] – Life After the NICU: It Gets Harder Why going home with a medically fragile baby brought even more pressure [40:00] – Dads Carry Trauma Too Postpartum stress, partner support, and being the emotional anchor [42:00] – Healing Through Storytelling Why sharing his story and connecting with other NICU dads has been life-changing [44:00] – Where to Find Support 💪 Join the NICU Dad Push-Up Challenge!NICU dads carry an invisible weight—emotionally, mentally, and physically. The "Built For This" Push-Up Challenge is a powerful way to honor that strength. Complete 100 push-ups a day for the number of days your child spent in the NICU, share your journey on social, and tag fellow NICU dads to join. This isn’t just a fitness challenge—it’s a movement to raise awareness and spotlight the resilience of NICU fathers. 🔗 Use hashtags: #musclesandmiracles #pushwithpurpose #thenicudadpushupchallenge Resources & Links from today’s episode 📌 Follow Alex & The NICU Dad Community: 🎧 More episodes: Share This Episode Know a NICU dad, partner, or healthcare team that would benefit from hearing a father's perspective? Share this powerful story to spark compassion, awareness, and connection. 🎙️ Subscribe & Review: Help more families find these stories by subscribing and leaving a review. 📩 Contact us: lyndsey@childlifeoncall.com 🎧 Listen Now and Honor the Stories of NICU Fathers Like Alex 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.
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Helping Kids Swallow Pills:Tips and tricks for Parents from a Child Life Specialist (256)-Adina's Story
05/28/2025
Helping Kids Swallow Pills:Tips and tricks for Parents from a Child Life Specialist (256)-Adina's Story
Learning to swallow pills can be a major milestone—and a big challenge—for many kids. In this episode, certified child life specialist Adina Levitan joins host Katie Taylor to break down the myths, fears, and best practices behind teaching children how to confidently swallow pills. From her clinical expertise to creative solutions like affirmations, games, and candy "pill" practice, Adina walks us through her unique approach to supporting kids and parents through this skill-building process. Whether you're a caregiver, clinician, or a parent trying to help your child at home, this episode is packed with insight, encouragement, and practical steps you can start today. In this episode, you’ll learn: ✅ Why pill swallowing is a learned skill that takes time and practice ✅ Tools and strategies to make learning fun and pressure-free ✅ How to create a pill-swallowing kit and step-by-step plan ✅ Creative tricks like affirmations, bingo, and candy practice ✅ Why early, low-stress practice is key—and how to know when to ask for more help Timestamps & Key Topics [00:00] – Meet Adina, CCLS Child life journey and hospital experience in surgery and oncology [06:00] – The First Pill Swallowing Consult How a simple Facebook post launched a new resource [08:00] – Why It’s Not a One-and-Done Skill Building confidence over weeks, not minutes [09:00] – The Candy Ladder Using sprinkles, Nerds, and Tic Tacs as practice tools [11:00] – The Birth of a Resource How Adina’s workbook was created for families and clinicians [12:00] – Unrealistic Hospital Expectations Why pill swallowing consults need more time and less pressure [14:00] – Every Kid Is Different There’s no one-size-fits-all technique—just trial, error, and support [15:00] – Ideal Ages and Proactive Practice Why second grade and up is a great place to start [16:00] – What’s in the Pill Swallowing Workbook? Affirmations, tools, weekly trackers, tips & tricks, and more [20:00] – Setting Up for Success When to practice, how long, and how to keep stress low [22:00] – Suggested 6–7 Week Practice Plan Why taking your time is key to success [23:00] – Incentives & Bingo Making pill practice feel like play [24:00] – How to Get the Resource Details on accessing the workbook for families Resources & Links 📌 📥 📲 Download the SupportSpot app to get support for procedures and resources today! 🎧 More episodes: Share Your Thoughts Has your child struggled to swallow pills? What strategies worked for you? Share your story or tag us with your own tips on Instagram. 🎙️ Subscribe & Review: Help more families discover these tools by leaving a review. 📩 Contact us: 🎧 Listen Now and Learn How to Make Pill Swallowing Easier for Kids 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.
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A Microtia Atresia Diagnosis: Hearing Aids, Surgery and a Journey of Hope [REPOST] - Kim's Story(255)
05/21/2025
A Microtia Atresia Diagnosis: Hearing Aids, Surgery and a Journey of Hope [REPOST] - Kim's Story(255)
“You make the best decision for yourself and your family—and you stick with it.”- Kim Pena What happens when you’re handed unexpected news at your child’s birth—and there’s no clear roadmap ahead? In this reposted episode, educator and mom Kim Pena shares her powerful journey as the parent of a child born with Microtia Atresia, a rare congenital condition affecting the ear. Kim was one of Katie’s very first guests on the Child Life On Call podcast, and her story is still a listener favorite to this day. In this repost, Katie kicks off the episode by giving us a quick update about Kim’s son. From discovering her son’s diagnosis at birth to making emotional, high-stakes decisions about surgery and hearing aids, Kim walks us through her family’s deeply personal experience with compassion, clarity, and humor. In this episode, you'll learn: ✅ What Microtia Atresia is and how it affects children ✅ How Kim and her husband navigated hearing loss, reconstructive surgery, and insurance battles ✅ Why early intervention with hearing aids changed everything ✅ What recovery and long-term care looked like for their son ✅ How to find trusted resources and support if your child is diagnosed Kim’s story offers encouragement, practical wisdom, and a reminder that joy often shines through the hardest moments. Timestamps & Key Topics ⏱️ [00:00] – Introduction: Meet Kim and Thomas Kim’s background as an educator, and how her son’s birth revealed an unexpected diagnosis ⏱️ [02:00] – What Is Microtia Atresia? Definition and how it affects the outer and middle ear Kim learns about the condition immediately after birth ⏱️ [04:00] – Family History and Diagnosis Challenges The connection to Kim’s brother-in-law Why this condition wasn’t caught on ultrasound ⏱️ [07:00] – Building a Support System How Kim’s relationship with her father-in-law became essential Finding emotional and logistical support from someone who’s been there ⏱️ [09:00] – First Surgeries and Hearing Tests Understanding Thomas’s hearing loss The process of getting tested, hearing aids, and early therapy ⏱️ [11:00] – Choosing the Right Surgery Exploring different surgical options, including rib graft and Medpor Why Kim’s family chose a single-surgery approach ⏱️ [13:00] – Surgery Day and Recovery A 13-hour surgery and the emotional toll Why recovery in California brought unexpected connections ⏱️ [16:00] – Post-Surgery Life & Daily Care What healing looked like in the months after Kim’s advice on establishing trust, prepping a toddler, and using distraction ⏱️ [20:00] – The Bittersweet Nature of Change Letting go of “his little ear” Gratitude for what the journey has taught their family ⏱️ [22:00] – Research, Advocacy & Making Confident Choices The role of online communities and navigating defensiveness Why Kim recommends aiding early—and being unapologetic about your choices ⏱️ [27:00] – A Life-Changing Hearing Aid Moment The first time Thomas could hear clearly—how it changed their world Why Kim wishes she had recorded that moment ⏱️ [29:00] – Final Reflection: Raising a “Joy Boy” Despite everything, Thomas’s joy and resilience shine through Why Kim’s journey is one of perspective, peace, and purpose Resources & Links 📌 Learn More About Microtia Atresia: – Up-to-date education & support – Parent-led advocacy and insurance help – Thomas’s surgeon with videos and guides – Additional surgical resource (Dr. Bonilla, San Antonio) 📲 Connect with Kim: Share Your Thoughts! Know someone raising a child with Microtia Atresia? Share this episode to let them know they’re not alone. 💬 Leave a comment or tag us on Instagram: 🎙️ Subscribe & Review: Help more families find these stories by leaving a review on your favorite podcast platform. 📩 Contact us: 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.
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Blended Tube Feeding for G-tube fed Kids & Adults: How a dietician empowers families through food - Hilarie’s Story (254)
05/14/2025
Blended Tube Feeding for G-tube fed Kids & Adults: How a dietician empowers families through food - Hilarie’s Story (254)
What if blending real food could transform your child’s tube feeding experience—and your entire family’s daily routine? In this inspiring episode, registered dietitian and new mom Hilarie shares how her career in pediatric nutrition led her to create , a platform and supportive community designed to help families explore real food options for children with feeding tubes. Hilarie and Katie have an insightful conversation about doing what works best for your family and how it is not an all-or-nothing approach when it comes to tube feeding. From clinical frustrations to practical breakthroughs, Hilarie’s story is packed with insight, empathy, and . In this episode, you’ll learn: ✅ What blenderized tube feeding is—and how it helps with digestion, connection, and flexibility ✅ How Hilarie’s work in a neurodevelopment clinic inspired her mission ✅ Common fears and how to overcome them when shifting from formula to real food ✅ How to start slowly and safely with blended meals (even using store-bought purees!) ✅ Where to find affordable support, recipes, and a welcoming online community Whether you’re new to tube feeding or ready to explore new options, this episode offers knowledge, support, and a hopeful outlook for the journey ahead. Timestamps & Key Topics ⏱️ [00:00] – Meet Hilarie: Registered Dietitian, New Mom, Real Food Advocate How her love of cooking, gardening, and clinical work intersected in her passion project Why food is central to her family and her mission ⏱️ [04:00] – The “Aha” Moment Behind Blended Tube Feeding Real families, real frustrations, and real improvements How small changes led to big results in digestion and quality of life ⏱️ [06:00] – Formula Isn’t the Enemy: Finding What Works Why Hilarie supports a nonjudgmental approach Blended food can be part-time, full-time, or not at all—it’s about what’s right for your child ⏱️ [08:00] – What Getting Started Looks Like Step-by-step tips: from single-ingredient purees to homemade blends Why slow is better—and how to build confidence without overhauling everything ⏱️ [11:00] – Real Fears, Real Parents Why many parents worry about “rocking the boat” What success looks like when routines become manageable and joyful ⏱️ [13:00] – Why Aren’t Dietitians Taught This? The history behind formula becoming standard How schools and hospitals are starting to reintroduce food-based tube feeding ⏱️ [14:00] – Hilarie’s Virtual Support Programs Online courses, a private community, and flexible coaching Affordable access to evidence-informed resources—starting at just $37/month ⏱️ [17:00] – Motherhood Perspective Shift How becoming a parent deepened her empathy for families Why accessibility, flexibility, and simplicity matter more than ever ⏱️ [19:00] – A Favorite Success Story One family’s journey from 2-hour feeds and fear of leaving the house—to freedom, flexibility, and Panera bread - How small wins can transform daily life ⏱️ [21:00] – Where to Start: Free Resources & Community Instagram, blog articles, recipes, and real-life advice Why you don’t have to figure it all out alone Resources & Links Get Free Resources: Starter tips, recipes, and blog articles: 📲 Follow Hilarie on Instagram: 💬 Join the Community Group: Share Your Thoughts! Are you considering blenderized tube feeding for your child? Have you tried it already? We'd love to hear your story! Comment below or tag us on social. 🎙️ Subscribe & Review: Help more families discover these powerful conversations. 🔗 Follow us on Instagram: 📩 Contact us: lyndsey@childlifeoncall.com 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.
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Prader-Willi Syndrome, Motherhood & Finding Community Through Advocacy [REPOST] (253)- Jessica's Story
05/07/2025
Prader-Willi Syndrome, Motherhood & Finding Community Through Advocacy [REPOST] (253)- Jessica's Story
📢 This is a special repost of one of our most heartfelt and insightful episodes. Whether this is your first time hearing Jessica’s story or a revisit, her perspective as a mom of a child with Prader-Willi Syndrome will stick with you. This month is also Prader- Willi Syndrome awareness month. What happens when a diagnosis changes everything you expected about motherhood? For Jessica Patay, it sparked a journey through fear, resilience, advocacy, and ultimately, the founding of an incredible nonprofit called We Are Brave Together. In this deeply moving episode, Jessica opens up about: ✅ Her son’s diagnosis with Prader-Willi Syndrome and the earliest signs ✅ The challenges of hypotonia, feeding tubes, and navigating early interventions ✅ How her family balances safety, structure, and joy with a life-altering genetic condition ✅ The impact of anxiety and food-seeking behaviors in PWS ✅ The emotional toll of parenting a medically complex child—and why self-care is essential ✅ Her mission to connect moms through retreats, support groups, and honest conversations Whether you're a parent of a child with a rare diagnosis, a caregiver, or a child life specialist, this episode offers comfort, validation, and powerful insight. Timestamps & Key Topics ⏱️ [00:00] – Meet Jessica Patay & Her Family A mom of three from California and founder of We Are Brave Together ⏱️ [04:00] – Ryan’s Birth and First Signs Something Wasn’t Right From a quiet newborn to a NICU stay, and the challenges of a delayed diagnosis ⏱️ [08:00] – Diagnosis: Prader-Willi Syndrome How a Google search and a persistent dad led to answers ⏱️ [10:00] – The Emotional Impact of Diagnosis The grief, the fog, and how Jessica slowly found strength ⏱️ [14:00] – Life with Feeding Tubes and Early Interventions Occupational, speech, and physical therapy in the early years ⏱️ [19:00] – Living with PWS: Hypotonia, Delayed Milestones, and Growth Hormone Ryan’s journey to walking at age three and building muscle ⏱️ [20:00] – When Food Becomes a Medical Emergency How the insatiable food drive in PWS shapes daily life—and safety plans ⏱️ [24:00] – Creating a Safe Home for Ryan Locked kitchens, food schedules, and adapting to his needs as he grows ⏱️ [26:00] – Rethinking Success: What Matters Most The shift from pushing academics to prioritizing happiness, safety, and stability ⏱️ [29:00] – Parenting Through Anxiety and Fatigue How PWS affects mental health—and how Jessica copes with it all ⏱️ [32:00] – Self-Care Without Shame Why letting go of perfection and choosing peace is essential ⏱️ [38:00] – Founding We Are Brave Together Jessica’s mission to combat caregiver isolation through connection and retreats ⏱️ [42:00] – How to Get Involved Join support groups, start a chapter, and access online resources ⏱️ [44:00] – What Ryan Has Taught Jessica A beautiful reflection on motherhood, perspective, and being changed for the better Resources & Links 🌐 Learn More: 📲 Follow Jessica on Instagram: 🎙️ Listen to Jessica’s Podcast: 📘 Explore Support for PWS: 📱 Access Child Life Tools Anytime: Share Your Thoughts! Were you moved by Jessica’s story? Are you a parent of a child with PWS or another complex diagnosis? We’d love to hear from you! Share this episode, tag us, and help other parents feel less alone. 🎧 Subscribe & Review: Every review helps more families find this supportive community. 🔗 Follow us on Instagram: 📩 Contact us: Host Katie Taylor and the team at SupportSpot 🎙️ Listen to More Episodes: Child Life On Call Podcast 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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Two Sisters with Cystic Fibrosis - Laura's Story (252)
04/30/2025
Two Sisters with Cystic Fibrosis - Laura's Story (252)
What would you do if both of your children were diagnosed with a life-threatening genetic disease—and there was no support system in place for parents like you? In this inspiring episode, Katie interviews Laura Bonnell, a former Detroit news reporter turned full-time advocate and nonprofit founder. After both of her daughters were diagnosed with cystic fibrosis (CF), Laura transformed her grief and determination into the Bonnell Foundation, providing real-time support to families across the U.S. who are navigating life with CF. In this powerful episode, we explore: ✅ How Laura pushed for her daughter’s diagnosis when doctors dismissed her instincts ✅ Why child life services were “among the best things” during hospitalizations ✅ What it’s like raising two daughters with cystic fibrosis in the same home ✅ The emotional toll of pretending “everything’s fine” as a medical parent ✅ How her foundation is providing financial relief, mentorship, and inspiration ✅ Why advocacy can take many forms—and how small actions can create significant change Whether you're a CF parent, a caregiver of a chronically ill child, or someone passionate about parent-led advocacy, this episode will move and motivate you. Timestamps & Key Topics ⏱️ [00:00] – The Power of Child Life Services How art, distraction, and support brought relief during hospital stays ⏱️ [03:00] – Meet Laura Bonnell From Detroit news reporter to cystic fibrosis advocate and nonprofit founder ⏱️ [06:00] – A Life-Altering Diagnosis How Laura’s instincts—and persistence—led to a CF diagnosis after months of dismissal ⏱️ [09:00] – Fighting for Answers & Processing the News Pulling over mid-assignment to receive the call—and deciding, that same day, to keep moving forward ⏱️ [12:00] – Advocacy from the Start Speaking publicly just weeks after diagnosis and discovering the emotional weight of her new reality ⏱️ [14:00] – Life with Two Children with CF Navigating work, marriage, and hospitalization rotations while trying to maintain “normalcy” ⏱️ [16:00] – School Accommodations & Advocacy Wins How brochures, IV poles, and enzymes in every classroom made private school possible ⏱️ [18:00] – The Hidden Truths of “Being Fine” Why Laura never told friends how hard it really was—and what she wishes she could’ve said ⏱️ [21:00] – Building Community & Finding Strength in Other Moms How hospital garden meetups and phone calls with CF parents created safe spaces ⏱️ [23:00] – Founding the Bonnell Foundation How a calendar and a vision turned into a national nonprofit serving families with CF ⏱️ [26:00] – What the Bonnell Foundation Offers From financial assistance and college scholarships to CF masterclasses and bilingual resources ⏱️ [28:00] – “Don’t F With Me”: Laura’s Strength as an Advocate Why she’ll knock on every door, from Capitol Hill to the hospital billing department ⏱️ [29:00] – Celebrating Her Daughters Emily’s resilience through hospitalizations and marathon training Molly’s fearless leap to study in London and become a sustainability changemaker Resources & Links 📌 Learn More About The Bonnell Foundation: 📲 Follow Laura Bonnell: 📘 Apply for Scholarships & Financial Support: 🎧 More Episodes: Child Life On Call Podcast Share Your Thoughts! Did Laura’s story inspire you? Are you a CF parent or caregiver walking a similar road? Share your story in the comments or tag us on social media to keep the conversation going. 🎙️ Subscribe & Review: Every review helps more families find this supportive community. 🔗 Follow us on Instagram: 📩 Contact the Show: lyndsey@childlifeoncall.com 📱 Get the App: Download to access child life resources anytime 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.
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A Nurse Practitioner’s Story of Grief, Strength & Advocacy [REPOST] (251)- Ashley's Story
04/23/2025
A Nurse Practitioner’s Story of Grief, Strength & Advocacy [REPOST] (251)- Ashley's Story
📢 This is a special repost of one of our most impactful and heartfelt episodes. Whether you’re hearing Ashley O’Neill’s story for the first time or revisiting it, her journey continues to resonate deeply with NICU families, pediatric providers, and anyone who has faced unimaginable loss and found strength in the aftermath. What happens when your personal and professional worlds collide in the NICU? For family nurse practitioner Ashley O’Neill, the journey into motherhood brought profound loss, relentless medical advocacy, and ultimately, a passion for helping others. Ashley’s story begins with the loss of her first son, followed by the premature birth of her second son Kolin at 25 weeks. What came next was 183 days in the NICU, the unexpected death of her husband, and the courage to rebuild a life—and community—from the ground up. In this heartfelt episode, we dive into: ✅ The trauma and triumph of parenting a 25-weeker through a 6-month NICU stay ✅ Navigating grief and motherhood after the loss of a child and spouse ✅ How Ashley’s medical background helped—and hurt—her NICU experience ✅ The frustrating reality of fighting for services, equipment, and insurance post-discharge ✅ How her Instagram and podcast connect NICU parents to life-changing resources ✅ The upcoming launch of her children’s book, It’s a NICU World Whether you’re a NICU parent, pediatric provider, or someone looking for hope in hard places, Ashley’s story will leave you inspired, seen, and supported. Timestamps & Key Topics ⏱️ [00:00] – Meet Ashley O’Neill Nurse practitioner, NICU mom, widow, and passionate advocate ⏱️ [01:00] – A Life-Changing Journey Begins Ashley’s first son, Vincent was born at 21 weeks and passed away shortly after birth Kolin’s birth at 25 weeks led to a 183-day NICU stay ⏱️ [04:00] – Between Medicine and Motherhood Navigating the NICU as a medical professional and a grieving mom ⏱️ [06:00] – Finding Strength in the Smallest Movements Kolin’s first days, brain bleeds, and the moment Ashley finally held him ⏱️ [10:00] – Advocacy in Action From NICU notebooks to signs above the incubator—Ashley’s daily commitment to giving Kolin a voice ⏱️ [14:00] – NICU Life, Community & Ronald McDonald House How support spaces and connections with other parents changed everything ⏱️ [18:00] – Creating Community Through Instagram and Podcasting How Ashley built a space for NICU parents navigating trauma, insurance, and life post-discharge ⏱️ [22:00] – Kolin’s Milestones & Medical Miracles G-tube, hydrocephalus, nonverbal communication—and now, reading, spelling, walking, and thriving ⏱️ [27:00] – No Limits: The Mindset That Changes Outcomes Why one provider said Kolin would never walk—and why Ashley refused to believe it ⏱️ [30:00] – Tips for Parents Leaving the NICU The reality of life post-discharge: equipment battles, Medicaid struggles, and why persistence is key ⏱️ [35:00] – Real Talk on Insurance & Resources How one visit to social services almost left her without home nursing Why you should never take the first “no” as your final answer ⏱️ [38:00] – The Inspiration Behind Ashley’s Children’s Book It’s a NICU World launches soon—with more books to follow Resources & Links 📘 Ashley’s Website & Resources: 📲 Follow Ashley on Instagram: 🎙️ Podcast – Ask the NICU Mama: Available on all major platforms 💛 Follow Ashley’s Personal Story: Share Your Thoughts! Did this episode resonate with you? Know a NICU parent who needs to hear this? We’d love to hear your story—tag us on Instagram or leave a review on your favorite podcast app. 🎧 Subscribe & Review: Your support helps more families find strength and support through stories like Ashley’s. 🔗 Follow us on Instagram: 📩 Contact us at lyndsey@childlifeoncall.com 🎙️ Listen to more episodes: Child Life On Call Podcast 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.
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A Rare Diagnosis Journey: Collagenous Gastritis and IGG deficiency (250)- Alexis' Story
04/16/2025
A Rare Diagnosis Journey: Collagenous Gastritis and IGG deficiency (250)- Alexis' Story
What if every milestone your child was supposed to reach came with countless curve balls? For Alexis Kaplan, motherhood quickly turned into a journey of advocacy, strength, and unwavering love as she navigated her daughter Gabby’s complex and rare health conditions. In this moving episode, Alexis shares: ✅ The moment her newborn was rushed to the NICU with a collapsed lung ✅ How her daughter’s recurring infections led to a diagnosis of immunodeficiency and collagenous gastritis ✅ The emotional toll—and strength—of being the medical historian and advocate for a medically complex child ✅ How weekly infusions, therapy, and figure skating are helping her daughter thrive ✅ Her advice for parents facing rare, chronic, or undiagnosed conditions This is a must-listen for anyone caring for a child with complex medical needs, healthcare providers who want to better understand the family perspective, and parents looking for inspiration and connection. Timestamps & Key Topics ⏱️ [00:00] – Meet Alexis Kaplan Mother of two, former PR pro, and fierce advocate for her daughter Gabby ⏱️ [03:00] – From a Healthy Start to a Medical Emergency Gabby is born with a spontaneous pneumothorax and was immediately taken to the NICU ⏱️ [08:00] – Life After NICU The strange silence in the hospital room and the emotional weight of an unexpected start ⏱️ [10:00] – Feeding Struggles and Early Signs Something Was Wrong Eczema, weight loss, food intolerance—and a mother’s instinct in full force ⏱️ [14:00] – The Fevers Begin Raging fevers, unrelenting illness, and a trip to the ER that revealed double pneumonia and RSV ⏱️ [19:00] – ENT Visits, Hearing Loss, and the Power of Child Life From audiology tests to the first Barbie from a Child Life Specialist—how support changed their hospital experience ⏱️ [22:00] – Asthma, Immunology & The First “Red Flag” Gabby’s pulmonologist recommends deeper testing, leading to a pivotal moment in her diagnosis journey ⏱️ [24:00] – Periodic Fever Syndrome & Tonsillectomy A working diagnosis leads to aggressive treatment—but symptoms persist ⏱️ [26:00] – Gastroenterology, Scopes & the Search for Answers A rare diagnosis: collagenous gastritis—so rare, the doctor had never seen it before ⏱️ [29:00] – The Diagnosis That Changed Everything Immunoglobulin deficiency is confirmed, leading to weekly subcutaneous infusions at home ⏱️ [31:00] – A Grey’s Anatomy Ritual & Finding Control Gabby takes charge of her infusions, watches Grey’s Anatomy, and finds a routine in the chaos ⏱️ [32:00] – Advocating for the Right Medication Alexis does her own research and fights for biologic treatment to manage Gabby’s symptoms ⏱️ [34:00] – Reflecting on Strength, Resilience & Motherhood The mental toll of advocating, comforting, and never giving up—and watching her daughter skate through it all ⏱️ [36:00] – TikTok Tips & Empowerment in the Hospital Line Gabby empowers other kids at the clinic with simple strategies to get through shots and IVs ⏱️ [37:00] – Final Reflections: Curveballs, Advocacy & Support How Facebook groups, therapy, and the power of asking questions help Alexis keep going Resources & Links 📌 Follow Gabby’s Skating Journey: 📌 Follow Alexis' New Blog: 📲 Learn About the SupportSpot App: Share Your Thoughts! Was this episode meaningful to you? Have your own rare disease parenting story or insights? We’d love to hear from you! Tag us on Instagram or leave a comment wherever you listen. 🎙️ Subscribe & Review: Help more families find support by subscribing and leaving a review on your favorite podcast app. 🔗 Follow us on Instagram: 📩 Contact: Connect with host Katie Taylor and the team behind SupportSpot. 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.
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