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.

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: [email protected] 📣 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. /episode/index/show/childlifeoncall/id/37374635

"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. /episode/index/show/childlifeoncall/id/37151895

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 [email protected] 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 /episode/index/show/childlifeoncall/id/37340055

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. /episode/index/show/childlifeoncall/id/37115565

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. /episode/index/show/childlifeoncall/id/37026060

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. /episode/index/show/childlifeoncall/id/36865225

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: [email protected] 🎧 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. /episode/index/show/childlifeoncall/id/36833885

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. /episode/index/show/childlifeoncall/id/36691365

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. /episode/index/show/childlifeoncall/id/36580225

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: [email protected] 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. /episode/index/show/childlifeoncall/id/36534495

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. /episode/index/show/childlifeoncall/id/36454015

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: [email protected] 📱 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. /episode/index/show/childlifeoncall/id/36358490

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 [email protected] 🎙️ 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. /episode/index/show/childlifeoncall/id/36190285

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. /episode/index/show/childlifeoncall/id/36152500

How to Talk With Children About Child Abuse [REPOST] (249)- Jane's Story 04/09/2025

How to Talk With Children About Child Abuse [REPOST] (249)- Jane's Story Knowing how to talk to kids about child abuse can feel overwhelming—but it doesn’t have to be. In this impactful episode of Child Life On Call, host Katie Taylor interviews child abuse prevention advocate Jane Donovan—who also happens to be her mom. Jane shares her personal journey, sparked by a tragic event, that led to a decades-long mission to protect children and educate communities. From creating a long-running puppet program for abuse prevention to empowering kids with body safety tools, this conversation is full of actionable advice for parents, caregivers, educators, and child life specialists. This is a special repost of one of our most important and requested episodes. Whether you’re hearing it for the first time or revisiting it, this conversation remains just as powerful and relevant today. In this episode, you'll learn: How to talk to kids about child abuse in age-appropriate, non-scary ways The importance of ongoing conversations about personal safety How tools like puppets, music, and hula hoops teach children about personal boundaries What parents should know about mandated reporting and how to act on their instincts How to evaluate youth-serving organizations for child safety protocols Why Children’s Advocacy Centers are essential for abuse investigation and healing Whether you're a parent, educator, or healthcare provider, this episode provides the tools and confidence you need to start meaningful conversations that protect kids and empower them. Timestamps & Key Topics ⏱️ [00:00] – Introduction: Meet Jane Donovan Katie introduces her guest (and mom), a lifelong child advocate Learn how the Child Life On Call app empowers families ⏱️ [03:00] – A Personal Story That Inspired a Mission How a child’s abduction changed Jane’s life Why she dedicated her career to child abuse prevention ⏱️ [06:00] – What Are Children’s Advocacy Centers? A child-friendly space for reporting, healing, and justice How they support kids through forensic interviews and therapy ⏱️ [09:00] – Making Conversations About Abuse Less Scary Why it’s not “the talk”—it’s ongoing, age-appropriate education Teaching safety in everyday moments without fear ⏱️ [11:00] – Teaching Kids About Boundaries with Puppets Introducing the “Kids Count Players” puppet show for elementary students Using storytelling and music to make serious topics approachable ⏱️ [15:00] – Personal Space for Children: Hula Hoops & “Uh-oh” Feelings How to use visual tools to teach kids about body autonomy and boundaries The difference between “good touch” and “confusing touch” ⏱️ [22:00] – Real Impact in Schools How the puppet show helped children disclose abuse Why teachers and counselors praise the program ⏱️ [23:00] – The Adult’s Role in Protecting Children Tips for keeping kids safe at camp, church, and extracurriculars How to ask youth-serving organizations about their safety policies ⏱️ [25:00] – Understanding Mandated Reporting Why professionals and caregivers must report suspected abuse How to file a report, even if you're unsure ⏱️ [29:00] – Practical Safety Tips for Parents Teach proper names for body parts Encourage privacy and reinforce their right to say “no” to unwanted contact ⏱️ [31:00] – Easy Tools & Takeaways How to start the conversation—and keep it going Resources & Links 📌 Learn about Children’s Advocacy Centers: 📺 Watch the Kids Count Players on 🎧 More podcast episodes: Subscribe & Connect 👍 Was this episode helpful? Tag us on social media and share your thoughts. 🎙️ Subscribe & Review: Help others find this essential information by rating and reviewing the podcast. 📩 Contact us: [email protected] 📲 Follow on 🎧 Listen now and start protecting kids through education and empowerment. 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. /episode/index/show/childlifeoncall/id/35991140

MERRF Syndrome and Motherhood: Raising and Remembering Dahlia - Jessica’s Story (248) 04/02/2025

MERRF Syndrome and Motherhood: Raising and Remembering Dahlia - Jessica’s Story (248) "We followed Dahlia’s lead—and Dahlia was not going to let this stop her.” — Jessica Fein What happens when your child’s diagnosis is so rare that no one—including your doctors—knows how to help? For Jessica Fein, navigating life with her daughter Dahlia’s MERRF Syndrome meant redefining motherhood, finding joy in unexpected places, and transforming grief into connection and advocacy. In this honest and deeply moving episode, we explore: ✅ What it’s like to go on a diagnostic odyssey, and finally get answers that bring more questions ✅ The complexity of parenting a child with medical needs, including the realities of home care and hospital stays ✅ How grief exists even while your child is alive—and what ambiguous grief means for medical parents ✅ The power of storytelling, finding meaning through writing, and connecting with community through shared experience Whether you’re a parent, provider, or someone looking to better understand the emotional layers of complex care and rare disease, this episode will resonate with you. Timestamps & Key Topics ⏱️ [00:00] – Episode Intro Meet Jessica Fein and hear the quote that shaped this conversation ⏱️ [01:00] – Jessica’s Story Begins Navigating the early years of parenting without answers ⏱️ [03:00] – Diagnosis & the Unknown The journey to a MERRF Syndrome diagnosis and what came next ⏱️ [09:00] – Life With a Rare Disease Hospital stays, trachs, and becoming the expert in your child’s care ⏱️ [13:00] – Following Dahlia’s Lead Letting joy and silliness guide the way ⏱️ [17:00] – Who Dahlia Was A peek into Dahlia’s personality and how she impacted everyone she met ⏱️ [20:00] – Writing As Healing How Jessica turned to writing as an act of reflection, advocacy, and self-care ⏱️ [24:00] – What Helps in the Hospital Tangible ways friends and providers can support caregivers ⏱️ [30:00] – Grief, Then and Now Understanding ambiguous grief—and the evolution of loss after death ⏱️ [33:00] – How to Connect With Jessica Where to find her book, podcast, and writing Resources & Links from today's episode: 📕 Read Breathtaking by Jessica Fein: [Available on Amazon and wherever books are sold] 🌐 Visit Jessica’s website: 🎧 Listen to her podcast: 📷 Follow Jessica Fein on , and Share Your Thoughts Did this episode resonate with you? Do you have a story of parenting through rare disease or complex medical care? We’d love to hear from you—tag us or leave a comment! If you found this episode meaningful, please subscribe and leave a review—it helps more families discover these conversations. ❤️ SupportSpot is Here for You SupportSpot gives you instant access to expert child life tips, emotional support, and medical journey resources. Try it FREE for 7 days! Subscribers can book a complimentary visit with a Child Life Specialist through Child Life On Call. Start now at childlifeoncall.com/supportspot 🎙️ Meet the Host Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform connecting families and care teams with expert child life services. A certified child life specialist for over 13 years, Katie has worked across pediatric healthcare settings, presented nationally, and is the author of a children’s book. She hosts the Child Life On Call Podcast to amplify parent voices and emphasize the value of child life services. 📱 📘 🔗 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: MERRF Syndrome, Rare Disease, Medical Parenting, Grief, Child Life /episode/index/show/childlifeoncall/id/35960670

A Cerebral Palsy Diagnosis: Traumatic Birth, Micropreemie Twins & the Power of Hope {REPOST}- Savannah’s Story (247) 03/26/2025

A Cerebral Palsy Diagnosis: Traumatic Birth, Micropreemie Twins & the Power of Hope {REPOST}- Savannah’s Story (247) “It wasn't any kind of strength within myself that helped me get through the NICU. It was the strength they had—they gave it to me.”- Savannah O'Malley We extend our sincere gratitude to our sponsor for this episode, Gebauer PainEase®. We are pleased to provide more information about this product, and we invite you to learn more by visiting their What happens when your birth plan is shattered in an instant? For Savannah, the unexpected arrival of her micropreemie twins at just 24 weeks turned her world upside down. One of her sons faced significant medical challenges, including brain bleeds and a cerebral palsy diagnosis, while the other grew without complications. Through it all, Savannah found healing in advocacy, art, and the power of sharing her story. In this moving episode, we explore: ✅ The emotional and medical complexities of delivering micro-preemie twins ✅ How a cerebral palsy diagnosis reshaped their family’s journey ✅ The silent struggle of maternal mental health after a traumatic birth ✅ Why peer support and storytelling matter in healing and advocacy ✅ How Savannah’s Cards of Hope project is making a difference for other NICU moms Savannah’s story is a testament to resilience, love, and the incredible strength of mothers navigating complex medical journeys. Whether you're a NICU parent, a healthcare professional, or someone seeking inspiration, this episode will leave you feeling empowered. Timestamps & Key Topics ⏱️ [00:00] – Episode Intro Welcome to today’s episode featuring Savannah O’Malley The importance of sharing NICU and maternal mental health stories ⏱️ [01:00] – Meet Savannah Mom to three, including twin micro-preemies Advocate for maternal mental health and children with disabilities ⏱️ [03:00] – The Unexpected Arrival: 24-Week Twins How Savannah’s pregnancy took a sudden turn Navigating a traumatic birth and immediate NICU admission ⏱️ [09:00] – The Medical Rollercoaster Begins Brain bleeds, heart complications, and emergency surgeries Balancing hope with overwhelming medical challenges ⏱️ [13:00] – A Life-Changing Diagnosis: Cerebral Palsy & Hydrocephalus How Lachlan’s brain injury shaped their early intervention journey The emotions of receiving a CP diagnosis and shifting expectations ⏱️ [24:00] – Maternal Mental Health: The Hidden Battle Why Savannah struggled with PTSD and anxiety The moment a medical professional finally validated her trauma Why maternal mental health screenings should extend beyond the NICU ⏱️ [30:00] – The Power of Peer Support Finding community in other NICU and disability moms How social media became a lifeline for connection and hope ⏱️ [38:00] – Turning Pain into Purpose: Cards of Hope How Savannah combined her love for art with her advocacy Sending free, uplifting artwork to mothers of traumatic births How small acts of kindness can have a profound impact ⏱️ [44:00] – Lessons from Motherhood & Advocacy Why Savannah wouldn’t change a thing about her son’s journey The importance of celebrating progress, not just milestones How caregivers can find strength in their child's resilience ⏱️ [50:00] – Where to Find Savannah & How to Support Cards of Hope How you can receive or gift a Card of Hope Why sharing your story can be the start of healing Resources & Links 📌 Sign Up for a Card of Hope: 📥 Follow Savannah’s Journey on Instagram: 🎨 Support the Cards of Hope Project: 🎧 Listen to more episodes: Share Your Thoughts! Did Savannah’s story resonate with you? Have your own experience with micropreemies or maternal mental health? We’d love to hear from you! Leave a comment below or tag us on social media. 🎙️ Subscribe & Review: If you enjoyed this episode, be sure to subscribe and leave a review—it helps more families find these powerful conversations! 🔗 Follow us on Instagram: 📩 Contact us: [email protected] 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. /episode/index/show/childlifeoncall/id/35808665

Pyroxd1 and the Path Forward: A Rare Disease, a Life-Saving Lesson & a Mission to Help Others- Maria + Matt's Story (246) 03/19/2025

Pyroxd1 and the Path Forward: A Rare Disease, a Life-Saving Lesson & a Mission to Help Others- Maria + Matt's Story (246) "What we realized was that rare isn’t as rare as we think—there are so many of us out here searching for answers, fighting for our kids, and trying to make a difference."- Maria Granados We extend our sincere gratitude to our sponsor for this episode, Gebauer PainEase®. We are pleased to provide more information about this product, and we invite you to learn more by visiting their What if a simple miscommunication in the hospital could have cost your child their life? For Maria and Matt Granados, parents of a daughter with Pyroxd1, that terrifying moment led to a groundbreaking realization—and a mission to help other families facing rare diseases. In this powerful episode, we dive into: ✅ The challenges of diagnosing and living with Pyroxd1, a rare neuromuscular condition ✅ A near-fatal hospital mistake that could have changed everything ✅ How they turned their personal struggles into Take Part Foundation, a nonprofit funding rare disease research ✅ The power of storytelling, advocacy, and community for families navigating the unknown Maria and Matt’s story is one of resilience, innovation, and advocacy, proving that "rare is more common than you think." Whether you’re a rare disease parent, medical professional, or someone looking for inspiration, this episode is a must-listen. Timestamps & Key Topics ⏱️ [00:00] – Episode Intro Welcome to today’s episode featuring Maria & Matt Granados Why raising awareness for Pyroxd1 is so important ⏱️ [01:00] – Meet Maria & Matt Their family’s journey: married 9 years, three kids, and an entrepreneurial spirit How flexibility in work became essential for parenting a child with complex medical needs ⏱️ [03:00] – The Start of Their Rare Disease Journey Pregnancy and early signs something was different with Natalie The challenges of getting doctors to take concerns seriously Being told “don’t worry” for a year—while their instincts said otherwise ⏱️ [09:00] – The Thanksgiving Hospital Crisis That Changed Everything Natalie’s sudden health decline and emergency hospitalization The shocking realization that hospitals don’t share medical records effectively How a simple website they built saved Natalie’s life by preventing a life-threatening medication error ⏱️ [13:00] – Turning Their Experience Into a Mission How their frustration with the system led them to found Take Part Foundation Why families need access to their child’s full medical history The power of self-advocacy in rare disease care ⏱️ [24:00] – What Is Pyroxd1? Understanding This Rare Condition A breakdown of what Pyroxd1 is and how it affects the body The difficulty of finding a diagnosis and why many families go undiagnosed ⏱️ [30:00] – The Reality of Rare Disease Research & “Death Valley” Funding The shocking truth: 95% of rare diseases have no FDA-approved treatment Why promising research often stalls due to lack of funding How Take Part Foundation provides grants to researchers in need ⏱️ [38:00] – How Take Part Helps Families Get Genetic Testing Many families can’t afford genetic testing—so Take Part is filling the gap The impact of a diagnosis on getting insurance coverage for therapies and equipment ⏱️ [44:00] – Strengthening Their Marriage Through the Rare Disease Journey The emotional toll of raising a medically complex child The mindset shift that saved their marriage: “If Natalie’s not offended, I don’t need to be offended.” The importance of seeing doctors as humans, too ⏱️ [50:00] – Let Your Fight Shine: A Message for Other Rare Parents Maria’s beautiful perspective on embracing the fight instead of hiding it Why advocacy is the most powerful tool rare disease parents have ⏱️ [52:00] – Where to Find Maria & Matt + How to Support Take Part Foundation How to get involved, donate, or apply for support Why storytelling is a crucial part of the rare disease journey Final words of encouragement for other families Resources & Links 📌 Learn More About Pyroxd1 & Take Part Foundation: 📥 Apply for Genetic Testing Support: (Coming Soon!) 📲 Follow Take Part on Instagram: 🎧 Listen to more episodes: Share Your Thoughts! Did you find this week's episode helpful? We’d love to hear from you! Leave a comment below or tag us on social media. 🎙️ Subscribe & Review: If you enjoyed this episode, be sure to subscribe and leave a review—it helps more families find these helpful conversations! 🔗 Follow us on Instagram: 📩 Contact us: ❤️ Ready to make hospital visits and medical journeys easier for your family? With SupportSpot, you get instant access to expert child life tips, emotional support, and resources right at your fingertips. For the next 7 days, try it FREE and discover how this app can reduce stress, ease your child’s anxiety, and help you feel more prepared every step of the way. Subscribers have the opportunity to sign up for a free visit with a Child Life Specialist at CLOC to help you get the support you need from SupportSpot. Try it for free by clicking 🎙️Meet the host: Katie Taylor is the co-founder and CEO of a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. 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. /episode/index/show/childlifeoncall/id/35656385

Navigating HIE: Hope for Families, and Life Beyond the NICU [REPOST]- Betsy's Story (245) 03/12/2025

Navigating HIE: Hope for Families, and Life Beyond the NICU [REPOST]- Betsy's Story (245) "I remember sitting in the NICU thinking, ‘Am I going to lose my baby? Is this the best outcome for him? What will his life look like?’ And then I realized—I wasn’t alone in these thoughts. Other parents had been here before, and they found a way forward. That’s when I knew we needed a community like Hope for HIE." — Betsy Pilon, Founder Hope for HIE We extend our sincere gratitude to our sponsor for this episode, Gebauer PainEase®. We are pleased to provide more information about this product, and we invite you to learn more by visiting their What happens when your child’s birth doesn’t go as planned, and you're suddenly navigating a diagnosis you never expected? For Betsy, the experience of welcoming her son Max was a crash course in resilience, advocacy, and finding a community that changed everything. In this heartfelt episode, we explore: ✅ What HIE (Hypoxic Ischemic Encephalopathy) is and how it affects newborns ✅ The emotional rollercoaster of an unexpected NICU stay ✅ How Betsy became involved with Hope for HIE and transformed it into a global support network ✅ The power of peer support, self-advocacy, and the importance of access to resources Whether you're a NICU parent, healthcare professional, or simply looking for an inspiring story of perseverance, this episode is for you. 📢 This Episode is a Repost! We’re bringing back this powerful conversation with Betsy from Hope for HIE—an episode that resonated deeply with so many listeners. Whether you’re hearing it for the first time or revisiting her inspiring journey, this story of resilience, advocacy, and community is one that never loses its impact. Timestamps & Key Topics ⏱️ [00:00] – Episode Intro Welcome to today’s episode featuring Betsy and her journey with Hope for HIE ⏱️ [01:00] – Meet Betsy How her son Max’s unexpected birth led to a life-changing mission Her background in healthcare communications and how it shaped her advocacy ⏱️ [03:00] – The Start of an HIE Journey Betsy’s pregnancy, the first signs of concern, and an unexpected emergency C-section The overwhelming first hours and days in the NICU ⏱️ [09:00] – Understanding HIE & Cooling Therapy What cooling treatment is and how it helps babies with HIE The difficult reality of not being able to hold or interact with your baby immediately ⏱️ [13:00] – The Emotional Impact of NICU Life Coping with uncertainty and the rollercoaster of NICU ups and downs How self-advocacy played a role in making decisions for Max’s care ⏱️ [24:00] – Finding Hope for HIE How a Google search connected Betsy with a community of families navigating the same diagnosis The power of peer support in the rare disease and medical parenting world ⏱️ [30:00] – From Personal Experience to Advocacy Turning lived experience into action by growing Hope for HIE into a thriving nonprofit How Hope for HIE provides resources, education, and community for families worldwide ⏱️ [38:00] – Life After the NICU: Max’s Journey Today Max’s growth, resilience, and the realities of life after an HIE diagnosis Balancing family life, advocacy, and raising awareness ⏱️ [44:00] – Advice for NICU & HIE Families What Betsy wishes she had known during those first days and weeks The importance of connection, education, and taking things one step at a time ⏱️ [50:00] – How to Connect with Hope for HIE Where to find support, resources, and get involved The mission to ensure no parent faces HIE alone Resources & Links 📌 Learn More About HIE & Hope for HIE: 📥 Request Support Materials for NICUs & Families: Hope for HIE Resources 📲 Follow Hope for HIE on Instagram: 🎧 Listen to more episodes: Share Your Thoughts! Did this episode resonate with you? Do you have an HIE or NICU experience to share? We’d love to hear from you! Leave a comment below or tag us on social media. 🎙️ Subscribe & Review: If you found this episode helpful, please subscribe and leave a review—it helps more families discover these stories and resources. ❤️ Ready to make hospital visits and medical journeys easier for your family? With SupportSpot, you get instant access to expert child life tips, emotional support, and resources right at your fingertips. For the next 7 days, try it FREE and discover how this app can reduce stress, ease your child’s anxiety, and help you feel more prepared every step of the way. Subscribers have the opportunity to sign up for a free visit with a Child Life Specialist at CLOC to help you get the support you need from SupportSpot. Try it for free by clicking 🎙️Meet the host: Katie Taylor is the co-founder and CEO of a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. 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: HIE (Hypoxic Ischemic Encephalopathy), NICU, Advocacy, Parent Support, Child Life Specialist /episode/index/show/childlifeoncall/id/35575705

A Mother and a Physician: Navigating Her Daughter’s NMOSD Diagnosis – Maggie’s Story (244) 03/05/2025

A Mother and a Physician: Navigating Her Daughter’s NMOSD Diagnosis – Maggie’s Story (244) "I thought my job was to save my daughter, but I realized my job was to show her how to live with strength and resilience." – Dr. Maggie Kang We extend our sincere gratitude to our sponsor for this episode, Gebauer PainEase®. We are pleased to provide more information about this product, and we invite you to learn more by visiting their In this powerful episode, Dr. Maggie Kang shares her deeply personal journey as a physician and a mother navigating her daughter’s rare disease diagnosis, Neuromyelitis Optica Spectrum Disorder (NMOSD). She discusses the emotional and medical challenges she faced, her transition into advocacy, and how she now supports families through life coaching. In an insightful conversation, Katie and Maggie explore the complexities of grief, resilience, and advocacy. Maggie opens up about the difficult moments in her daughter’s diagnosis, how she learned to trust her instincts, and the importance of both self-care and community in the rare disease journey. Together, they discuss the emotional weight of parenting a child with a chronic illness and the ways families can empower themselves in the healthcare system. What You’ll Take Away from This Episode: 🏥 Navigating the Medical System: She shares how she advocated for faster testing, sought expert opinions, and utilized her connections to expedite care. 🤝 The Importance of Community: Connecting with other rare disease parents provided knowledge, support, and hope for the future. 💔 Processing Grief and Change: Katie and Maggie discuss the emotional toll of rare disease parenting and how healing often begins after leaving the hospital. 📢 Advocacy Matters: Maggie's push for better understanding of NMOSD has helped bring awareness and improve care options for future patients. 💙 Self-Care for Caregivers: She emphasizes how caring for oneself is critical in sustaining long-term caregiving and preventing burnout. Connect With Dr. Maggie Kang ❤️ Ready to make hospital visits and medical journeys easier for your family? With SupportSpot, you get instant access to expert child life tips, emotional support, and resources right at your fingertips. For the next 7 days, try it FREE and discover how this app can reduce stress, ease your child’s anxiety, and help you feel more prepared every step of the way. Subscribers have the opportunity to sign up for a free visit with a Child Life Specialist at CLOC to help you get the support you need from SupportSpot. Try it for free by clicking 🎙️Meet the host: Katie Taylor is the co-founder and CEO of a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. 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: NMOSD, Female Physician, Doctor Mom, Pediatrics, Child Life Specialist /episode/index/show/childlifeoncall/id/35530005

243: A Child Life Specialist’s Search for Answers: A Long COVID Diagnosis - Jessica’s Story 02/19/2025

243: A Child Life Specialist’s Search for Answers: A Long COVID Diagnosis - Jessica’s Story "If something doesn’t feel right, don’t ignore it. Keep asking questions. You know your child better than anyone."-Jessica Baird, CCLS We extend our sincere gratitude to our sponsor for this episode, Gebauer PainEase®. We are pleased to provide more information about this product, and we invite you to learn more by visiting their What do you do when doctors keep telling you nothing is wrong—but your child is in pain every single day? For Jessica, a child life specialist and mom, that answer was simple: keep pushing until someone listens. In this powerful conversation, Katie sits down with Jessica to talk about the emotional, and eye-opening journey she went through to get answers for her daughter. What started as mild COVID symptoms quickly turned into persistent leg pain, countless doctor visits, dismissals, and dead ends—until finally, they got the diagnosis: long COVID. Katie and Jessica dive into what it feels like when medical professionals dismiss your concerns, how to find the right doctors who will listen, and why trusting your instincts as a parent is everything. They also talk about how long COVID is still misunderstood, especially in kids, and what families can do if they suspect their child is affected. What You’ll Take Away from This Episode: 💡 Your intuition is your superpower – If you feel something isn’t right, don’t back down. 💡 Not all doctors get it right the first time – Second (and third) opinions can make all the difference. 💡 Long COVID in kids is real – But many medical professionals still don’t recognize it. 💡 You’re not alone – There are resources, specialists, and support groups out there to help. Links & Resources: 🔗 Connect with Jessica Listen to Jessica's episode with Katie where they talk about Long Covid Resources Mentioned in Today's Episode ❤️ Ready to make hospital visits and medical journeys easier for your family? With SupportSpot, you get instant access to expert child life tips, emotional support, and resources right at your fingertips. For the next 7 days, try it FREE and discover how this app can reduce stress, ease your child’s anxiety, and help you feel more prepared every step of the way. Subscribers have the opportunity to sign up for a free visit with a Child Life Specialist at CLOC to help you get the support you need from SupportSpot. Try it for free by clicking 🎙️Meet the host: Katie Taylor is the co-founder and CEO of a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. 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. /episode/index/show/childlifeoncall/id/35276350

242:A Daughter's PCHD19, Autism + Epilepsy Diagnosis: The motivation behind the connected parent-Julie's Story 02/05/2025

242:A Daughter's PCHD19, Autism + Epilepsy Diagnosis: The motivation behind the connected parent-Julie's Story "I had to teach myself to advocate – no one should leave a hospital with more trauma than they came with."- Julie Walters We extend our sincere gratitude to our sponsor for this episode, Gebauer PainEase®. We are pleased to provide more information about this product, and we invite you to learn more by visiting their In this episode, Katie speaks with Julie Walters, a mom of two neurodivergent children, entrepreneur, and fierce advocate for inclusion and health equity.Julie shares her deeply personal journey navigating her daughter's epilepsy diagnosis, the challenges of parenting through complex medical experiences and how these experiences led her to create The Connected Parent – a resource hub empowering families to find critical services for children with medical complexities or neurodivergence. Julie's story is one of strength, determination and advocacy. Key Takeaways we learn from Julie and Katie's Conversation: ✨ Becoming an Advocate Early: Julie's passion for advocacy began in childhood, growing up with a mother who had schizoaffective disorder. She learned how to find resources through persistence and necessity. 💡 Navigating Medical Crises as a Parent: Julie recounts the night she discovered her daughter’s epilepsy through a life-saving baby monitor alert and the emotional toll of multiple seizures, hospital stays, and sleepless nights at the PICU. 🩺 Parent-to-Parent Support: During one of the hardest times in the hospital, another mom introduced Julie to epilepsy resources – reinforcing the power of community and shared experiences. 🌐 Creating The Connected Parent: Julie’s frustration with the lack of easily accessible resources for medical and neurodivergent families led her to create The Connected Parent, a platform like Yelp for finding therapists, schools, camps, and more. 👩‍👧 Involving Her Daughter in the Mission: Julie's daughter, Violet, plays an active role in the platform – from Instagram content to product ideas. Her participation highlights the importance of empowerment and shared purpose. Links & Resources: 🔗 The Connected Parent: ❤️ Ready to make hospital visits and medical journeys easier for your family? With SupportSpot, you get instant access to expert child life tips, emotional support, and resources right at your fingertips. For the next 7 days, try it FREE and discover how this app can reduce stress, ease your child’s anxiety, and help you feel more prepared every step of the way. Subscribers have the opportunity to sign up for a free visit with a Child Life Specialist at CLOC to help you get the support you need from SupportSpot. Try it for free by clicking 🎙️Meet the host: Katie Taylor is the co-founder and CEO of a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. /episode/index/show/childlifeoncall/id/34672605

241: How a Kidney Transplant started a mission to help Transplant Families-Cheryl + Kimmy's Story 01/22/2025

241: How a Kidney Transplant started a mission to help Transplant Families-Cheryl + Kimmy's Story “Our goal wasn’t to build something huge overnight – it was to listen to families, fill the gaps, and take that first step.” – Cheryl Whitty We extend our sincere gratitude to our sponsor for this episode, Gebauer PainEase®. We are pleased to provide more information about this product, and we invite you to learn more by visiting their In this heartfelt episode, Katie sits down with mother-daughter duo, Cheryl Witty and Kimmy Witty to hear the inspiring story of how their family journeyed through chronic kidney disease and how a kidney transplant led to the creation of the Children's Transplant Initiative (CTI). Kimmy shares her personal experience of being diagnosed at age 12, receiving a life-saving kidney transplant, and how that experience fueled her passion for helping other families. Kimmy is now a certified Child Life Specialist and shares how her experiences inspired her to choose this as her career. Cheryl reflects on her journey of being a mother and caregiver and how CTI has grown to provide housing, financial assistance, and mentorship for transplant families across Texas. Cheryl and Kimmy shares her experience transitioning from pediatric to adult care and how the role of parents can shift as their children grow into adulthood. 🔑 Key Points: Kimmy’s Transplant Journey: Diagnosed at 12 with a rare kidney disease, Kimmy received a life-saving transplant from her father, inspiring her passion for helping others. Founding Children’s Transplant Initiative (CTI): Kimmy, Cheryl and Ross created CTI to support transplant families through mentorship, financial aid, and housing programs. Programs and Growth: CTI began by mentoring one family at a time and has grown to provide housing for families in Houston and Austin, with plans to expand to Dallas. Kimmy’s Career Path: Inspired by her experiences, Kimmy is starting as a Child Life Specialist to support children facing medical challenges. Family Strength and Advocacy: Cheryl and Kimmy reflect on resilience, emphasizing how personal experiences can drive advocacy and create lasting impact for others. ✨ Takeaways for Listeners: The importance of starting small—CTI began with just one family in need. Pediatric transplant patients often face lifelong medical journeys, highlighting the need for continued advocacy and resources. Personal experiences can lead to powerful career paths—Kimmy’s journey inspired her to become a Child Life Specialist. 🌐 Links and Resources from today's Episdoe Visit the to learn more about the incredible resources they offer to families in Texas 📲 Follow CTI on Social Media: ❤️ Ready to make hospital visits and medical journeys easier for your family? With SupportSpot, you get instant access to expert child life tips, emotional support, and resources right at your fingertips. For the next 7 days, try it FREE and discover how this app can reduce stress, ease your child’s anxiety, and help you feel more prepared every step of the way. Subscribers have the opportunity to sign up for a free visit with a Child Life Specialist at CLOC to help you get the support you need from SupportSpot. Try it free by clicking 🎙️Meet the host: Katie Taylor is the co-founder and CEO of a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. /episode/index/show/childlifeoncall/id/34633540

240: How to Stay Calm During Medical Procedures 01/13/2025

240: How to Stay Calm During Medical Procedures In this episode of Child Life On Call, host Katie Taylor, a certified child life specialist, shares personal experiences and practical advice on maintaining calm during your child's medical procedures. Katie recounts a traumatic incident with her daughter, emphasizing the natural parental panic response and how to manage it. She offers three key strategies: getting informed about medical procedures, finding a supportive role during the process, and taking care of your own physical and emotional needs. Katie introduces the Support Spot app as a valuable resource, providing step-by-step guides for over 50 medical procedures. This episode aims to equip parents with the tools and confidence needed to support their children effectively during medical challenges. 00:00 Introduction and Personal Story 02:30 Understanding Parental Panic 03:11 Managing Emotions During Medical Procedures 03:28 Empowering Yourself with Information 04:24 Finding a Role to Play 05:27 Taking Care of Your Needs 06:05 Conclusion and Final Thoughts 07:53 Support Spot App and Resources 09:24 Closing Remarks When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: Download SupportSpot 85% of users report high satisfaction, appreciating the SupportSpot app's comprehensive resources and user-friendly interface. 92% of parent users say the SupportSpot app's helped them understand medical procedures and treatment better. 80% of parents believe the SupportSpot app's has contributed to better health outcomes for their child. 73% of parent users believe the SupportSpot app's has made them feel more empowered to advocate for their child in healthcare Learn more . Meet the host: Katie Taylor is the co-founder and CEO of a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. /episode/index/show/childlifeoncall/id/34826165

239: Finding Grants Brought Hope - Abby's Story: A son's near drowning accident 01/08/2025

239: Finding Grants Brought Hope - Abby's Story: A son's near drowning accident “Hope doesn’t take away the darkness, but it shines some light in it.”- Abby Zachritz We extend our sincere gratitude to our sponsor for this episode, Gebauer PainEase®. We are pleased to provide more information about this product, and we invite you to learn more by visiting their In this powerful first episode of the year, Katie sits down with Abby Zachritz—better known as Advocacy Abby—who shares her journey from personal tragedy to becoming a beacon of hope for families in need. Abby recounts the near-drowning accident that changed her son Wyatt’s life and how her unwavering hope and faith led her to discover vital resources. Now, through her platform, Abby connects families with grants and support they may not even know exists. This conversation is filled with practical advice, emotional insights, and inspiration for any parent navigating complex medical journeys. Katie and Abby dive into deep conversations about what it means to have hope during difficult seasons. 🔑 Key Points: Abby’s Story: Learn how Wyatt’s near-drowning accident, the initial prognosis, and how faith and hope played a role in his recovery. The Role of Hope: Why hope is essential for families facing medical uncertainty, and how it impacts not just parents but the entire care team. Community Support: How Abby’s community rallied around her family with meals, transportation, and childcare during hospital stays. Discovering Grants and Resources: Abby explains how she found grants to fund life-changing therapies and equipment for Wyatt. The Birth of Advocacy Abby: How Abby’s personal experiences led her to create a platform that connects families with essential grants and resources. The Connect Platform: Abby’s resource for families to search for grants by location, diagnosis, and need—streamlining a once overwhelming process. ✨ Takeaways for Listeners: Hope is a Lifeline: Even in the darkest moments, holding onto hope can make a difference in your child’s recovery journey. Ask for Help: Don’t be afraid to lean on your community and accept support—it’s vital for your well-being and your child’s care. Grants Exist for a Reason: There are countless grants available for equipment, therapy, and even family vacations—many families just need to know where to look. Preparation is Key: Keep diagnosis letters, IEPs, and insurance denials in one file to simplify grant applications. Advocacy Matters: What you learn from your experience can help another family; advocacy can start with sharing one resource or grant. 🌐 Links and Resources from today's Episdoe ❤️ Ready to make hospital visits and medical journeys easier for your family? With SupportSpot, you get instant access to expert child life tips, emotional support, and resources right at your fingertips. For the next 7 days, try it FREE and discover how this app can reduce stress, ease your child’s anxiety, and help you feel more prepared every step of the way. Subscribers have the opportunity to sign up for a free visit with a Child Life Specialist at CLOC to help you get the support you need from SupportSpot. Try it free by clicking 🎙️Meet the host: Katie Taylor is the co-founder and CEO of a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. /episode/index/show/childlifeoncall/id/34632615

238: Parents: How to Make the Most out of Rounds in the Hospital 01/06/2025

238: Parents: How to Make the Most out of Rounds in the Hospital Navigating Medical Rounds: Tips for Parents from a Child Life Specialist In this episode, Katie Taylor, a certified child life specialist, offers critical insights and tips for parents navigating medical rounds with their hospitalized children. She introduces Q Rounds, a new tool developed by Dr. Mike aimed at making rounds more predictable and accessible for families. Katie explains the purpose and structure of rounds, highlighting the importance of family-centered rounds. She provides strategies for effective communication with the healthcare team, including preparing questions in advance and understanding the role of nurses during rounds. Katie also emphasizes the value of collaboration and offers solutions for parents who can't be physically present, such as using apps like SupportSpot for consistent support and information. The episode aims to empower parents with the knowledge to advocate for their child's healthcare needs effectively. 00:00 Welcome and Introduction 00:08 Understanding Medical Rounds 00:56 Introducing Q Rounds 02:08 The Importance of Family-Centered Rounds 03:47 Tips for Effective Rounds Participation 06:50 Alternative Ways to Participate in Rounds 07:48 Conclusion and Additional Resources When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: Download SupportSpot 85% of users report high satisfaction, appreciating the Child Life On Call App’s comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcare Learn more . Meet the host: Katie Taylor is the co-founder and CEO of a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. /episode/index/show/childlifeoncall/id/34730150

237: Holding Space for Hope : The Final Episode of 2024 12/18/2024

237: Holding Space for Hope : The Final Episode of 2024 "Hope isn't about avoiding the hard truths. It's about staying grounded in them and still believing that something good is possible."- Katie Taylor In this final episode of 2024, Katie dives deep into the meaning of hope, exploring its role in navigating challenges for parents, children and Child Life Specialists. Reflecting on personal experiences and heartfelt conversations with families, this episode unpacks how hope isn’t blind optimism but a source of strength that coexists with pain and uncertainty. With stories, reflections, and an invitation to carry hope into the new year, this episode is a comforting reminder of resilience and connection. Key Highlights Reflecting on the Year: A heartfelt wrap-up of 2024 with reflections on challenges, growth, and achievements in child life advocacy and care. Unpacking Hope: Hope is often misunderstood as blind positivity, but it’s actually about survival and resilience in the face of reality. The Role of Hope in Healthcare: For families navigating diagnoses or healthcare challenges, hope provides strength and a way to keep moving forward, even amidst uncertainty. Children and Hope: Children express hope in simple yet profound ways, teaching us to approach challenges with courage and trust. A Message to the Child Life Community: Encouragement for continued growth, innovation, and using technology to expand child life’s impact on families. An Invitation to Reflect: Listeners are encouraged to reflect on their own hopes and carry them into the new year. Resources for Listeners: : A free 7-day trial available on iOS and Android, designed for families, clinicians, and child life specialists to support children through healthcare experiences. Child Life On Call Website: Explore resources and previous episodes, and learn more about child life services at . Advocacy Abby's Episode (Coming Soon): Look out for the upcoming episode in January featuring Abby’s story of hope after her son’s near-fatal drowning accident. A HUGE thank you to our sponsors: : Nutrition support for healthy digestion. Use code “ChildLifeOnCall” to get 25 percent off. 30% of children struggle with constipation and it can feel impossible trying to find a solution for your child. Especially if your child has food allergies or has a condition or illness, you want to feel good about the products you are selecting for your child. To me, finding a company whose products have the highest quality and natural ingredients is really important. Begin Health®’s flagship product, Growing Up Prebiotics, is a tasteless, textureless fine powder that easily mixes into water, juice, or smoothies. This makes it convenient for daily use without altering the flavor of your child’s favorite beverages. 25% off selected products: Daily Growing Up Prebiotics 28-Pack, Daily Growing Up Prebiotics Family Size, Double Subscription - Prebiotics, Families On-The-Go, Beginbaby Pre + Pro 28-Pack, Poop Tracker Gamecards and Stickers (6)🥇 Applies to subscription and one-time orders Applies to first 1 subscription orders Limited to one use per customer Meet the host: Katie Taylor is the co-founder and CEO of a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. /episode/index/show/childlifeoncall/id/34471725

236: The Mix of Joy & Grief through Medical Parenting (autism, lissencephaly and lennox gastaut syndrome) – Joanne's Story 12/04/2024

236: The Mix of Joy & Grief through Medical Parenting (autism, lissencephaly and lennox gastaut syndrome) – Joanne's Story "Life is always in the mix of joy and grief, and those things coexist. But this is how I’m going to deal with it." - Joanne De Simone In this episode of the Child Life On Call Podcast, Joanne De Simone shares her journey as a parent raising two sons with disabilities. From navigating her eldest son Benjamin’s rare brain malformation, lissencephaly and complex medical needs to supporting her younger son Sebastian, who is on the autism spectrum. Joanne discusses the challenges, victories, and personal growth she’s experienced. As a mother and special education teacher, and now an advocate for families of children with special needs, Joanne reflects on the importance of building community, embracing support, and living fully in the moment. Her story offers hope and practical wisdom for parents and professionals alike. Key Insights: The Power of Community: Joanne emphasizes the importance of connecting with other families who share similar experiences, as they provide invaluable emotional and practical support. Advocating for Your Child: Joanne shares her approach to advocating for her sons, including the importance of interviewing healthcare providers to ensure they see her children as whole individuals. Living in the Moment: Joanne describes how her background in modern dance taught her to “live in the movement,” helping her find balance and perspective amid constant challenges. Adapting Over Time: Joanne reflects on how the challenges of parenting evolve as children grow, from educational decisions to navigating adult systems of care. Strength in Vulnerability: Through writing and advocacy, Joanne has found a way to process her experiences and turn them into a source of strength for others. A HUGE thank you to our sponsors: : Nutrition support for healthy digestion. Use code “ChildLifeOnCall” to get 25 percent off. 30% of children struggle with constipation and it can feel impossible trying to find a solution for your child. Especially if your child has food allergies or has a condition or illness, you want to feel good about the products you are selecting for your child. To me, finding a company whose products have the highest quality and natural ingredients is really important. Begin Health®’s flagship product, Growing Up Prebiotics, is a tasteless, textureless fine powder that easily mixes into water, juice, or smoothies. This makes it convenient for daily use without altering the flavor of your child’s favorite beverages. 25% off selected products: Daily Growing Up Prebiotics 28-Pack, Daily Growing Up Prebiotics Family Size, Double Subscription - Prebiotics, Families On-The-Go, Beginbaby Pre + Pro 28-Pack, Poop Tracker Gamecards and Stickers (6)🥇 Applies to subscription and one-time orders Applies to first 1 subscription orders Limited to one use per customer Resources and Tips Shared: Joanne’s Blog and Book: Visit Joanne’s blog at to learn more about , and read more through her Support Groups for Rare Conditions: Joanne highlights the value of connecting with email support groups and online communities for rare conditions. Search for condition-specific groups on platforms like Facebook or Yahoo Groups. Begin Health Prebiotics: The gut health of children is important. Visit and use code ChildLifeOnCall for 25% off products. SupportSpot: Download the SupportSpot app at childlifeoncall.com/supportspot for resources tailored to families navigating pediatric care. Tune in for an episode filled with vulnerability, wisdom, and a reminder of the strength found in community and resilience. When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: Download SupportSpot 85% of users report high satisfaction, appreciating the Child Life On Call App’s comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcare Learn more . Meet the host: Katie Taylor is the co-founder and CEO of a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. /episode/index/show/childlifeoncall/id/34266415

235: A Mother’s Journey of Love, Loss, and Resilience (crohn's and ulcerative colitis) - Kathy's Story 11/20/2024

235: A Mother’s Journey of Love, Loss, and Resilience (crohn's and ulcerative colitis) - Kathy's Story “If anybody was to ask me what is one of my biggest strengths, I have to tell them it's resilience… You can throw almost anything at me and I can handle it. I mean, there isn't anything any bigger in this world than losing a child.”-Kathy In this heartfelt episode, Katie Taylor sits down with Kathy, a mother who shares her journey of raising and caring for her daughter Lauren through multiple medical challenges and eventual passing. Kathy’s story is both heart-wrenching and inspiring. Kathy reflects on the emotional, physical, and logistical challenges of managing long hospital stays, becoming a caregiver to a child with complex medical needs, and balancing self-care amid unimaginable circumstances. Her insights on resilience, self-advocacy, and the deep bond with her daughter provide comfort and inspiration. Kathy’s story is a powerful reminder of the strength it takes to navigate pediatric healthcare, turning pain into purpose, and the lasting impact of a parent's love. "I was there when that beautiful creature wandered into my life, and I was there when she drifted out." – Kathy Key Insights: The Importance of Self-Care: Kathy emphasizes the need to care for oneself to better support a sick child and encourages parents to take breaks from the hospital without guilt. Parent as Advocate: Transitioning into the role of a medical advocate for her daughter, Kathy highlights how training, learning, and persistence made a difference in Lauren’s care. Finding Strength in Connection: Kathy discusses the vital role of family, friends, and small acts of kindness in sustaining her during Lauren’s long hospital stays. Maintaining Normalcy: From packing business-casual clothes to involving Lauren in picking outfits, Kathy underscores the importance of preserving a sense of normalcy amid medical chaos. Legacy of Resilience: Kathy’s advocacy didn’t end with Lauren’s passing; she continues to support others by sharing her story and working on resources for long hospital stays. A HUGE thank you to our sponsors: : Nutrition support for healthy digestion. Use code “ChildLifeOnCall” to get 25 percent off. 30% of children struggle with constipation and it can feel impossible trying to find a solution for your child. Especially if your child has food allergies or has a condition or illness, you want to feel good about the products you are selecting for your child. To me, finding a company whose products have the highest quality and natural ingredients is really important. Begin Health®’s flagship product, Growing Up Prebiotics, is a tasteless, textureless fine powder that easily mixes into water, juice, or smoothies. This makes it convenient for daily use without altering the flavor of your child’s favorite beverages. 25% off selected products: Daily Growing Up Prebiotics 28-Pack, Daily Growing Up Prebiotics Family Size, Double Subscription - Prebiotics, Families On-The-Go, Beginbaby Pre + Pro 28-Pack, Poop Tracker Gamecards and Stickers (6)🥇 Applies to subscription and one-time orders Applies to first 1 subscription orders Limited to one use per customer Resources and Tips: Tailored guidance for families navigating medical experiences. Learn more of bringing smiles to children, families, and hospital staff nationwide. Join us to celebrate 12 years of inspiring performances, powerful stories, and magical moments. For a minimum donation of just $12, you can access Win Win Charity's 2024 Telethon fundraiser show in honor of our 12 years of bringing smiles to children in hospitals nationwide! Join the celebration featuring our 2024 "Entertainer of the Year" Tom Pesce, our 2024 "Hospital of the Year" Le Bonheur Children's Hospital, and our first-ever documented patient journey. There are two ways to join the experience on December 2nd! #1 Attend virtually on LeaderPass from anywhere in the world with a virtual pass. #2 Come to our in-person watch party at The Beverly Theater in downtown Las Vegas. We have a special surprise performance at our rooftop reception following the Telethon for those attending in Las Vegas. Simply donate $12 (or more), and we'll see you there! Reserve your spot: When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: Download SupportSpot 85% of users report high satisfaction, appreciating the Child Life On Call App’s comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcare Learn more . Meet the host: Katie Taylor is the co-founder and CEO of a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. /episode/index/show/childlifeoncall/id/33995872

234: Expert Child Life Tips for Supporting Children Through an Upper GI Procedure 11/13/2024

234: Expert Child Life Tips for Supporting Children Through an Upper GI Procedure Today's episode is dedicated to the loving memory of Dr. Meredith Hitch, a cherished pediatric gastroenterologist at Ochsner Baton Rouge. “You want to make sure that you are ready to be able to prepare not only yourself but your kiddo.” - Emily Martinec, CCLS In this episode host Katie Taylor chats with Emily Martinec, another experienced Child Life Specialist. These two dive into the complexities of preparing children for an upper GI procedure. They provide valuable insights and practical tips for both parents and fellow specialists, sharing lessons learned from their work in pediatric radiology and GI. From scheduling the procedure to supporting children emotionally and physically, Katie and Emily guide listeners through every step of the process for both kids and parents. Whether you're a parent or a professional, this episode is packed with advice to help create an emotionally safe and successful experience for children. A HUGE thank you to our sponsors: : Nutrition support for healthy digestion. Use code “ChildLifeOnCall” to get 25 percent off. 30% of children struggle with constipation and it can feel impossible trying to find a solution for your child. Especially if your child has food allergies or has a condition or illness, you want to feel good about the products you are selecting for your child. To me, finding a company whose products have the highest quality and natural ingredients is really important. Begin Health®’s flagship product, Growing Up Prebiotics, is a tasteless, textureless fine powder that easily mixes into water, juice, or smoothies. This makes it convenient for daily use without altering the flavor of your child’s favorite beverages. 25% off selected products: Daily Growing Up Prebiotics 28-Pack, Daily Growing Up Prebiotics Family Size, Double Subscription - Prebiotics, Families On-The-Go, Beginbaby Pre + Pro 28-Pack, Poop Tracker Gamecards and Stickers (6)🥇 Applies to subscription and one-time orders Applies to first 1 subscription orders Limited to one use per customer Key Insights Preparation is Key: Schedule the procedure around your child’s routine (e.g., feeding and nap times) and advocate for care at a pediatric facility. Child-Led Support: Tailor explanations based on your child’s age—toddlers need short, concrete steps, while older children benefit from a detailed walkthrough. Creative Coping Strategies: Bring familiar items like a favorite cup or lovey, and offer simple choices (e.g., flavoring options for the barium). Parent Emotional Regulation: Stay calm and positive, which helps children feel safe and supported during the procedure. Teamwork with Staff: Collaborate with radiology staff and child life specialists to create a smooth experience tailored to your child’s needs. Resources and Tips: : Step-by-step guidance and visuals for procedures like the upper GI. Age-Appropriate Preparation Tips: This episode provides strategies tailored to each age group, offering practical and developmentally appropriate tips to help ease anxiety and ensure a smoother experience for both kids and caregivers. When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: Download SupportSpot 85% of users report high satisfaction, appreciating the Child Life On Call App’s comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcare Learn more . Meet the host: Katie Taylor is the co-founder and CEO of a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. /episode/index/show/childlifeoncall/id/33844222

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