Child Life On Call: Parents Of Children With An Illness Or Medical Condition Share Their Stories With A Child Life Specialist

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

"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 res

“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 website. 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

"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 website. 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, advoca

"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 website. 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 b

"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 website. 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 discu

"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 website. 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 wh

"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 website. 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, gr

“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 website. 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 pro

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 Th

“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 website.  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. 

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 Medi

"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

"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

“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 cre

  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:  BeginHealth Prebiotics: Nutrition support f

A huge thank you to our sponsor of today's podcast, Begin Health.  - Use code CHILDLIFEONCALL for 25% 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)

A huge thank you to our sponsor of today's podcast, Begin Health.  - Use code CHILDLIFEONCALL for 25% 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)

Child Life Specialist Secrets: Flu Shot Prep Strategies Every Parent Should Know Thank you to the sponsor of today's podcast: Begin Health In this episode of the Child Life On Call Podcast, hosts Katie Taylor and Emily Martinec, both certified child life specialists, discuss strategies for preparing, supporting, and responding to children during flu shots. The conversation extends to other medical experiences, offering developmentally appropriate ways to engage children. They emphasize collaboration with medical professionals, highlight coping techniques, and provide resources like the Support Spot app and a digital flu shot preparation course for parents. The focus is on empowering parents and creating a positive healthcare experience for children. 00:00 Introduction to Flu Shot Preparation 01:10 Empowering Parents and Respecting Medical Professionals 03:05 Understanding the Emotional Impact of Shots 04:08 Practical Tips for Flu Shot Day 09:31 Pain Management Techniques 21:07 Post-Shot Processing and Recover

230: Navigating Childhood Cancer: Supporting families through her own experience - Heather's Story  "We’ve joined a club that nobody wants to be a part of, but the good part is we have the best members." A huge thank you to our sponsor of today's podcast, Begin Health.  In this episode, Katie Taylor interviews Heather, host of the Navigating Childhood Cancer podcast and mother of a teenager diagnosed with leukemia, in honor of Childhood Cancer Awareness Month. They discuss the challenges of receiving a cancer diagnosis for your child, managing cancer treatments, including pill swallowing, and navigating parent guilt. Heather shares her family's journey and how she balanced protecting her son while also being open about her experience to support other families. Through her podcast, Heather provides a space for families to share their stories, giving listeners the strength to cope with childhood cancer. Key Insights & Lessons Learned: Pill Swallowing is a Process: Sometimes the goal isn’t mastering a tech