Inside the Children's Hospital

For many families, going home from the hospital feels like the finish line. But what happens when the emotional impact of a medical experience lingers long after discharge? On this episode of Inside the Children's Hospital, Katie Taylor sits down with Jen Aspengren, founder of Alongside Network, to discuss pediatric medical traumatic stress (PMTS), a common yet often overlooked experience that affects children, parents, siblings, and caregivers following serious medical events. Jen shares her family's journey after her infant son underwent life-saving airway surgery at just seven months old. While his physical recovery went well, the emotional effects lasted for years, leading Jen to discover a significant gap in support for families navigating life after hospitalization. Together, Katie and Jen explore: Jen's son's diagnosis of congenital subglottic stenosis and emergency airway surgery The unexpected emotional toll that followed after returning home What pediatric medical traumatic stress (PMTS) is and how it affects the entire family Common signs of traumatic stress in children, parents, and caregivers Why many families feel isolated after discharge despite receiving excellent medical care The importance of validation, community, and coping skills during recovery How small moments of connection from healthcare providers can build trust and resilience The impact of emotional support on long-term health outcomes and medical adherence How Alongside Network is helping families and healthcare providers better navigate medical trauma Jen also shares practical insights for healthcare professionals, highlighting how simple actions—such as a follow-up phone call or a few moments of acknowledgment—can make a lasting difference for families facing difficult diagnoses and hospitalizations. This conversation is a powerful reminder that healing doesn't end when a child leaves the hospital. Supporting the emotional well-being of children, parents, and caregivers is an essential part of recovery. About Our Guest Jen Aspengren Jen Aspengren is the founder of Alongside Network, a nonprofit organization dedicated to helping families and healthcare providers address pediatric medical traumatic s

What happens when the healthcare professional becomes the parent sitting on the other side of the diagnosis? In this episode, Katie Taylor sits down with Melissa Apa—a clinical pharmacist, diabetes educator, and mom—to share her family's journey navigating both celiac disease and type 1 diabetes with her young son. Melissa opens up about the emotional overwhelm of receiving life-changing diagnoses, even with years of medical expertise behind her, and how her family learned to adapt, advocate, and find stability in the chaos. From replacing every pot and pan in her kitchen overnight to teaching her six-year-old how to manage his insulin pump, Melissa shares the realities of parenting a child with chronic illness while balancing work, marriage, caregiving, and the emotional toll of always being "on." Together, Katie and Melissa explore the invisible mental load medical parents carry, the importance of empowering kids to advocate for themselves, and why support systems matter just as much as medical education. This conversation is honest, practical, and deeply hopeful for any parent navigating a chronic diagnosis with their child. What You'll Hear in This Episode: The unexpected appointment that changed everything with a celiac diagnosis Why Melissa says her entire career prepared her to care for her son The emotional impact of becoming both a healthcare provider and a medical mom How type 1 diabetes and celiac disease are often connected The pressure parents feel around "good" and "bad" numbers in diabetes care Why medical parents need systems, routines, and "go bags" to survive daily life Teaching children to advocate for themselves in school and healthcare settings The realities of never fully stepping away from caregiving responsibilities How Melissa and her husband creatively protect their relationship and mental health Why diabetes management can become more manageable with support and practice Key Takeaways: Chronic illness management is emotional—not just medical <p dir="ltr" role="presentati

"I kept telling her, 'We've got this.' And inside, I had no clue what was coming next." What does it look like to be "the strong one" when your world is falling apart? In this episode, Katie Taylor sits down with Jared Muscat—dad, surfer, and self-proclaimed "dad-vocate"—to share his family's unexpected journey into the NICU after a high-risk pregnancy. From a routine 20-week appointment to welcoming his son Ollie at just 25 weeks, Jared opens up about fear, resilience, and what it means to show up as a partner and father in crisis. He shares the emotional weight of protecting his family while processing his own grief, the importance of finding support, and how small rituals—like late-night NICU visits and lullabies—helped him bond with his son. This is an honest, heartfelt conversation about fatherhood, vulnerability, and the strength it takes to keep going when nothing feels certain. What You'll Hear in This Episode: The moment everything changed during a routine pregnancy appointment Navigating uncertainty, fear, and decision-making as a dad and partner The emotional experience of becoming a NICU parent overnight How Jared balanced supporting his wife, caring for his older son, and coping himself The power of routines, community, and finding other dads who understand What bonding looks like in the NICU—and the moment it finally clicked Life after the NICU and adjusting to a new normal at home Key Takeaways: Dads experience deep emotional strain in the NICU—often quietly You don't have to carry everything alone—finding support is essential Small, consistent rituals can create stability in chaos Bonding doesn't always happen immediately—and that's okay The NICU feels endless, but it won't last forever About Our Guest: Jared Muscat is a father of two, a marketing agency owner, and a passionate advocate for NICU dads. Through his own experience, he now supports other families navigating complex medical journeys. Resources to Support NIC

In this episode of Inside the Children's Hospital, Katie Taylor sits down with Dr. Matt Goldstein—physician, biotech leader, and father—who shares the story of his daughter, Havi, and her diagnosis with Tay-Sachs disease. Despite both parents undergoing genetic screening before starting their family, a testing error led to a missed diagnosis. Javi appeared to develop typically at first, but over time, subtle changes led to a life-altering realization: she had a rare, fatal neurodegenerative condition. As a physician, Matt was trained to solve problems. As a parent, he was driven to protect his child. But in the face of a disease with no cure, he and his wife had to redefine what "doing everything" truly meant. From navigating complex medical decisions to choosing presence over intervention, Matt shares how their family embraced a different path—one centered on love, connection, and living fully in the time they had. This conversation is a powerful reflection on grief, meaning, and the transformative impact of parenthood. You'll hear: What it was like to receive a Tay-Sachs diagnosis after reassuring genetic testing How a medical error changed the course of their family's life The emotional tension between medical training and parental instinct What it means to "do everything" in a non-medical way How Havi communicated joy, preferences, and personality without words The role of community and parent-to-parent connection during grief How the family created meaningful traditions, including weekly "Shabirthdays" The impact of loss on identity, purpose, and career direction What You'll Learn in This Episode: What Tay-Sachs disease is and how it affects the body The limitations—and importance—of genetic screening Why preventive genetics is one of the most powerful tools in modern medicine How families can approach decision-making when facing life-limiting diagnoses The importance of redefining quality of life beyond clinical

Supporting Families in Pediatric Healthcare: Insights from Parent Caregivers In this episode, we explore the experiences of parent caregivers navigating their child's complex health journeys, emphasizing the importance of advocacy, sharing stories, and hospital-family collaboration. Join us as these incredible parents discuss how they advocate for their children, the role of social media in building community, and what hospital leadership can do to improve family-centered care.Key topics covered: Why parents start sharing their child's medical journey online and the impact of community support The evolving nature of sharing sensitive health information as children grow How hospital staff and leadership can support effective communication and continuity of care The importance of family system support and staff retention for a positive hospital experience Personal reflections on speaking up at the bedside and overcoming advocacy barriers Resources and advocacy initiatives led by parent caregivers, including support groups and educational tools Timestamps: 00:46 - Introduction to the episode and guest caregivers' perspectives 01:47 - The role of social media in sharing real-time hospital experiences 05:56 - Reasons behind sharing stories online and the community that forms 09:15 - How sharing supports advocacy and awareness efforts 13:08 - Balancing transparency and privacy when sharing health updates 15:15 - Evolving sharing practices as children grow older 18:57 - Privacy considerations for children with medical needs 21:42 - What hospital staff and leadership can do to improve family experiences 24:22 - The importance of continuity of care and staff retention 28:43 - Overcoming barriers to speaking up at the bedside 33:08 - Building trust and advocacy in healthcare teams 38:32 - Supporting parental mental health and caregiver well-being 44:03 - Strategies for effective parent-physician communication 49:38 - Parent-led initiatives and resources to empower families 51:45 - Current projects and ways to connect with the speakers 55:12 - Closing remarks and gratitudeResources & Links: Child Life On Call <li

What happens when a diagnosis labeled "lethal" doesn't tell the full story? In this episode of Inside the Children's Hospital, Katie Taylor sits down with Nicole, a mom of five, who shares her daughter Charlotte's journey with Trisomy 13—a diagnosis often associated with limited survival and quality of life. After receiving devastating news over the phone while at work, Nicole and her husband were told their daughter likely wouldn't survive. But instead of accepting that narrative, they sought out information, second opinions, and a care team willing to partner with them. From navigating medical bias and a complicated NICU stay to bringing Charlotte home without nursing support, Nicole shares what it really looks like to parent a medically complex child—and the joy that exists alongside the challenges. This conversation highlights the importance of advocacy, informed decision-making, and viewing each child as an individual—not just a diagnosis. You'll hear: What it was like to receive a Trisomy 13 diagnosis unexpectedly and over the phone How Nicole and her husband navigated conflicting medical opinions and bias The critical role of second opinions and finding the right care team What life looks like caring for a child with a trach, ventilator, and G-tube How siblings adjusted and built meaningful relationships with Charlotte The reality of parenting without in-home nursing support Why quality of life is often misunderstood—and deeply personal This is a story of advocacy, resilience, and redefining what's possible What You'll Learn in This Episode What Trisomy 13 is and how it can present differently in every child Why it's important to ask questions and advocate within the healthcare system How medical bias can impact care decisions—and how to navigate it The value of support groups and connecting with other families What daily life can look like for families of medically complex children How

What does it look like when life changes in an instant—and a family learns to navigate the unimaginable? In this episode of Inside the Children's Hospital, Katie Taylor sits down with Marah, a mom of four, who shares her daughter Abigail's journey after a cardiac arrest at just nine days old. What began as a healthy twin pregnancy quickly shifted into a complex medical path involving a NICU stay, life support, and long-term care needs. As Marah and her husband entered the world of medical parenting, they faced fear, uncertainty, and overwhelming decisions. Through it all, they leaned on their care team, family support, and each other—learning how to advocate, adapt, and ultimately find moments of joy within the journey. This conversation highlights the realities of raising a medically complex child, the power of community, and how resilience is built over time. You'll hear: What it was like navigating a sudden cardiac arrest in a newborn The early days in the NICU and learning to care for a medically complex child How Marah advocated for family presence and support during hospitalization The transition from crisis to confidence in managing trach and G-tube care How community, connection, and shared experiences shaped their journey The emotional realities of ongoing medical challenges, including epilepsy This is a story of advocacy, growth, and finding strength in the most unexpected places. What You'll Learn in This Episode Why learning CPR and emergency preparedness can be life-saving for families How to advocate for your child and communicate your needs with care teams The role of multidisciplinary care in managing complex medical conditions What life at home can look like with medical equipment and home nursing support How community and peer support impact long-term coping and resilience The importance of asking for help and building a sustainable support system How perspectives can shift f

What happens when your child seems sick, but everything keeps coming back normal? For a lot of parents, the scariest part isn't the diagnosis. It's the not knowing. It's being told everything looks fine when your gut is telling you something is off. This week, Katie sits down with Kayleigh, a medical assistant and mom of three, to share the story of her daughter Kanessa. Almost a year after a freak eye injury that seemed to heal, Kanessa suddenly got sick. At first, it looked like a simple virus. But within days, things escalated fast. Kaylee shares what it was like trying to make sense of symptoms that didn't quite add up. Normal test results. A child who seemed okay one minute and not the next. And that moment when everything changed with one scan. From there, their world shifted quickly. A brain bleed. A diagnosis of bacterial meningitis. Emergency surgery. A 40-day hospital stay. Kaylee talks about what it took to keep going through all of it, while also caring for a newborn and being away from her other child. She also shares how she supported Kanessa through it all. Being honest about what was happening. Preparing her for procedures. Letting her ask questions. And leaning on Child Life in a way that made a huge difference for both of them. If you've ever wondered if you're overreacting or if you should push for more answers, this episode will stay with you. Kaylee's story is a reminder to trust yourself and keep advocating. This episode is sponsored by Gebauer PainEase®. We're so grateful for their support. To learn more about this product, visit their website. This is our 300th episode, which feels pretty surreal. We're so grateful you're here. This episode is sponsored by Gebauer PainEase®. We extend our sincere gratitude to Gebauer PainEase® for supporting this episode. To learn more about this product, visit their website. Special Giveaway ☕️Your support means so much to us, and we're truly grateful for this community. As a small thank you, we're offering a $10 Starbucks gift card to the first 20 listeners who leave a review. If the podcast has made an impact on you, we'd love to hear your thoughts. Simply screenshot your review and email it to [email protected] to claim yo

What happens when your child already senses something life-changing—before anyone has found the words to say it out loud? When serious illness enters a family, children often understand more than we realize. And for caregivers, the challenge becomes not only navigating medical decisions, but also finding the right way to support their children through it all. This week, Katie sits down with Anna Lonon, founder of the Lonon Foundation, to share her family's story of navigating cancer when her husband Michael was diagnosed with stage three head and neck cancer at just 29 years old. While raising a young son and later welcoming a newborn daughter, Anna faced the unimaginable reality of caregiving, loss, and parenting through profound uncertainty. Anna opens up about what it looked like to balance hospital visits, therapies, and daily life, and the emotional toll of making impossible decisions while trying to hold her family together. She shares powerful moments, including the realization that her young son understood far more about his father's illness than anyone had explained, and how that shaped the way she approached communication in the years that followed. After later facing her own cancer diagnosis, Anna made a different choice—seeking out child life support early to guide honest, developmentally appropriate conversations with her children. Through her experiences, she highlights the importance of listening to children's cues, trusting your instincts as a parent, and creating space for both grief and resilience. If you've ever struggled with how to talk to your child about illness, felt overwhelmed as a caregiver, or wondered how to support your family through uncertainty, this conversation offers validation, insight, and hope. This episode is sponsored by Gebauer PainEase®. We extend our sincere gratitude to Gebauer PainEase® for supporting this episode. To learn more about this product, visit their website. Resources from today's episode: Visit the Lonon Foundation website Pickles Group Wonders & Worries Connect with Us Subscribe: Never miss an episode on Apple Podcasts or Spotify. Visit insidethechildrenshospital.com to search stories and episodes easily <li dir="ltr"

What happens when your instincts tell you something is wrong—but you're dismissed again and again? For many parents, the journey to a diagnosis begins with a gut feeling—and the courage to persist in seeking answers. This week, Katie sits down with Nikki McIntosh, author and advocate, to share the story of her son Miles, who was diagnosed with spinal muscular atrophy (SMA) at just 18 months old. After noticing delays in his ability to stand and bear weight, Nikki followed her instincts despite initial dismissal—ultimately leading to a life-changing diagnosis. Nikki shares what those early days looked like—from navigating testing and procedures to receiving the diagnosis that changed everything. She opens up about the grief, fear, and urgency that followed, and how she quickly stepped into the role of advocate, building a care team and learning how to navigate complex medical systems in real time.. If you've ever questioned your instincts or felt lost navigating a diagnosis, this conversation offers validation, practical guidance, and hope. This episode is sponsored by Gebauer PainEase®. We extend our sincere gratitude to Gebauer PainEase® for supporting this episode. To learn more about this product, visit their website. Resources & Ways to Connect Visit Nikki's Website Find her book wherever books are sold (Amazon, Barnes & Noble, Target, and more) Helpful Resources Mentioned National Organization for Rare Disorders (NORD) Global Genes Cure SMA (patient advocacy organization) Connect with Us Subscribe: Never miss an epi

Within minutes of arriving at the hospital, Brady and his wife were told their newborn daughter had suffered a severe brain injury. In this episode of Inside the Children's Hospital, Katie sits down with Brady Crandall, founder of Youth Crews, to share his family's journey following a diagnosis of hypoxic ischemic encephalopathy (HIE). What began as a routine pregnancy quickly turned into an emergency delivery, NICU stay, and a new reality as parents of a medically complex child. Brady opens up about: The shock and uncertainty of those early days Navigating life as a "medical dad." The balance of grief and joy that often coexist How early intervention and community shaped their path Through this experience, Brady recognized a gap many families face: a lack of dignified, age-appropriate products for children with disabilities. That realization led to the creation of Youth Crews—a brand focused on comfort, dignity, and rethinking what medical products can look like for kids. If you've ever found yourself wishing something existed to better support your child—or felt the pull to create change—this episode will leave you feeling seen, understood, and inspired. This episode is sponsored by Gebauer PainEase®We extend our sincere gratitude to Gebauer PainEase® for supporting this episode. To learn more about this product, visit their website. Resources & Ways to Connect Learn more about Youth Crews and their mission to create dignified products for kids with disabilities Follow Youth Crews on Instagram Mentioned in This Episode Hope for HIE community Anchor Center for Blind Children (early intervention services) Driven by Purpose Podcast Connect with us! <li dir="ltr" aria-

How do you prepare a child for surgery and build trust with their medical team? This episode explores how families and healthcare providers can work together to support children through procedures like tonsillectomy and other medical challenges. This week's guest, Dr. Tali Lando, shares her perspective as a pediatric ENT surgeon, author, and mom of three teenage daughters. She and Katie discuss what it's really like for families navigating medical care with complex kids and how parents can advocate effectively while still building strong partnerships with their child's care team. If you've ever wondered how to build trust with your child's doctor, prepare your child for surgery, or understand the perspective of the people caring for your child, this episode offers meaningful insight and reassurance. Dr. Lando's message is clear: the best outcomes happen when families and providers work together as partners. We extend our sincere gratitude to our sponsor for this episode, Gebauer PainEase®. We are pleased to provide more information about this product, and we invite you to learn more by visiting their website. Resources & Ways to Connect: Book: Breathless: Surgical Tales from the Brink and Back By Dr. Tali Lando  Available on Amazon Website  Instagram Connect with us!  Subscribe: Never miss an episode on Apple Podcasts or Spotify. Visit insidethechildrenshospital.com to search stories and episodes easily Follow us on Instagram for updates and opportunities to connect with other parents <p dir="ltr" role="presentation"

What does life really look like after a child receives a kidney transplant? Many people think transplant is the end of the journey—but for families, it's often just the beginning. This week's guest, Lyndsey Fedorko, returns to the podcast to share the next chapter of her son James's medical journey—life after a kidney transplant. After years of dialysis, hospitalizations, and uncertainty, James received a life-saving kidney transplant from his aunt, marking the beginning of a new season for their family. Lyndsey and Katie reflect on the intense months surrounding transplant surgery, including relocating their family to Houston, navigating the transplant workup process, and the emotional weight of waiting while two surgeries—donor and recipient—happened at the same time. Lyndsey shares what recovery really looked like, from the long hospital stay caused by a rare complication to the daily routines required to protect James's new kidney. Lyndsey shares openly about the ongoing care James still needs, including medications, monitoring for rejection, therapies, and the unexpected challenges that came after transplant—including a rejection episode that required intensive treatments. If you've ever wondered what life after pediatric transplant truly looks like, this conversation offers an honest and hopeful look at resilience, advocacy, and the power of family support. We extend our sincere gratitude to our sponsor for this episode, Gebauer PainEase®. We are pleased to provide more information about this product, and we invite you to learn more by visiting their website. Resources & Ways to Connect: Connect with Lyndsey Children's Transplant Initiative Provides housing and support for families traveling for pediatric transplant care. IROC (Improving Renal Outcomes Collaborative)- Support and Educational Resources for families navigating pediatirc Kidney Transplants Connect with us! Subscribe: Never miss an episode on Apple Podcasts or Spotify. <li dir

This week's guests, perinatal mental health therapists Emily Souder and Mahaley Patel, share the story behind their book Your NICU Story: Reflecting on Your Family's Experience—a guided journal created to help families process the emotional impact of a NICU stay. Mahaley also opens up about her daughter, Sachi, who died after a NICU stay, and how storytelling and narrative healing became a lifeline in her grief. She and Emily talk with Katie about why so many NICU parents carry trauma long after discharge and how writing your story can help families reconnect with what they experienced. They also discuss the emotional weight of making medical decisions during a NICU stay, the importance of compassionate healthcare providers, and why healing sometimes begins months or even years later. If you've ever struggled to process a NICU experience—or wondered how to revisit it in a way that feels safe and meaningful—this conversation offers powerful insight and hope. Emily and Mahaley's biggest message? Your story deserves space, compassion, and time—and reflecting on it can be an important step toward healing. We extend our sincere gratitude to our sponsor for this episode, Gebauer PainEase®. We are pleased to provide more information about this product, and we invite you to learn more by visiting their website. Resources & Ways to Connect: Book: Your NICU Story: Reflecting on Your Family's Experience Available wherever books are sold, including Amazon, Barnes & Noble, and local bookstores. Emily Souder, LMFT, PMH-C Website Instagram Mahaley Patel, LMFT, PMH-C Instagram Connect & Support from Child Life On Call: Subscribe: Never miss an episode on Apple Podcasts or Spotify. Visit insidethechildrenshospital.com</

What happens when your child shares something that shifts the future you thought you understood? In this episode of Inside the Children's Hospital, Katie sits down with Kelly Kemp — certified child life specialist of more than 30 years and mom of three — to talk about navigating trust, grief, advocacy, and love after her child was diagnosed with gender dysphoria and came out as transgender. Kelly shares: The phone call that changed everything Navigating substance use and mental health concerns Grieving privately while choosing love publicly Rebuilding trust with her child Supporting siblings during a major transition Setting boundaries with extended family Finding affirming medical and mental health care Holding faith and parenting together during uncertainty This conversation is not about politics. It is about parenting inside a medical diagnosis. It is about trust. It is about grief that doesn't mean rejection. And it is about the steady, protective love that children need — especially when the world feels loud. Whether your child is navigating a medical diagnosis, identity development, or a season you didn't anticipate, this episode will remind you: Grief and love can coexist. Trust is foundational. And your child still needs you. Resources & Crisis Support: The Trevor Project: Providing crisis intervention and suicide prevention services to lesbian, gay, bisexual, transgender, queer & questioning (LGBTQ) young people. Call: 1-866-488-7386 Text: START to 678-678 988 Suicide & Crisis Lifeline: For mental health crises in the US. Free Mom Hugs WPath (World Professional Association for Transgender Health) The Trans Family Alliance

How do you help a child respond when someone asks about a scar, burn, or limb difference? This week's guest, Abby Horton, opens up about her journey as a Child Life Specialist working across ICU, burn, surgical, rehab, and inpatient settings—and how those experiences shaped the way she supports families navigating physical differences. From sudden trauma and accidents to limb differences, burn injuries, surgical scars, and hair loss from chemotherapy, Abby shares how parents can gently empower their children to own their story with confidence. She and Katie discuss simple, age-appropriate scripts that help children respond to questions about their bodies. Abby explains why modeling these conversations early matters, how to give kids space to answer for themselves, and why curiosity from peers is often just that—curiosity, not cruelty. If you've ever wondered how to help your child respond to stares, questions, or comments about a physical difference, this conversation offers practical tools and deep reassurance. Abby's biggest message? You're probably doing better than you think—and it's not about having perfect words, but about helping your child feel loved and supported. Today's Episode is sponsored by Moog Medical. Moog Medical is a trusted leader in infusion and enteral feeding technology, designing reliable, easy-to-use pumps that support safe, precise care for patients with complex medical needs—at home and in healthcare settings. Resources & Ways to Connect: Website: Little Lighthouses Child Life Services Instagram: @littlelighthouseschildlife Abby offers virtual support for families navigating physical differences, medical transitions, and post-hospital adjustment. Connect & Support from Child Life On Call: Subscribe: Never miss an episode on Apple Podcasts or Spotify. Visit insidethechildrenshospital.com to search stories and episodes easily Follow us on Instagram for updates and opportunities to connect with other parents <a href= "https:/

This week's guest opens up about the shock of an emergency C-section at 25 weeks and 3 days, the fear of entering the NICU for the first time, and the powerful role Child Life Specialists played in supporting not only Vincent, but their entire family, including his older brother. She reflects on what helped her cope during long NICU days, how she advocated for herself using her healthcare background, and what she wishes she had known about the "medically complex" label sooner. This episode explores sibling bonding in the NICU, the impact of a truly integrated care team, the importance of addressing social determinants of health, and how resilience can grow in the smallest of patients. Anna's story is a beautiful reminder that families may not remember every name—but they will always remember how they were made to feel. Today's Episode is sponsored by Moog Medical. Moog Medical is a trusted leader in infusion and enteral feeding technology, designing reliable, easy-to-use pumps that support safe, precise care for patients with complex medical needs—at home and in healthcare settings. Resources Mentioned Today's Episode: Hand to Hold March of Dimes Ronald McDonald House Caringbridge Connect with Anna: Anna is open to connecting with other NICU families—please email us at [email protected] if you would like to connect with her! Connect & Support from Child Life On Call: Subscribe: Never miss an episode on Apple Podcasts or Spotify. Visit insidethechildrenshospital.com to search stories and episodes easily Follow us on Instagram for updates and opportunities to connect with other parents <a href= "https://childlifeoncall.com/supports

When tube feeding enters your life—whether at birth, in childhood, or adulthood—it can feel overwhelming, isolating, and misunderstood. In this special live episode of Inside the Children's Hospital, we center the voices of those with lived experience to explore what tube feeding really looks like beyond the diagnosis and discharge instructions. Host Katie Taylor is joined by parent advocates, a young adult patient, and a pediatric dietitian to share honest, unfiltered perspectives on NG tubes, G-tubes, GJ tubes, and blended feeds. Together, they discuss early fears and misconceptions, navigating medical systems and insurance, advocating for better options, and how tube feeding can ultimately bring relief, stability, and freedom. This conversation highlights the power of community, the importance of being believed, and what compassionate, family-centered support truly looks like—for patients, parents, and professionals alike. Today's Episode is sponsored by Moog Medical. Moog Medical is a trusted leader in infusion and enteral feeding technology, designing reliable, easy-to-use pumps that support safe, precise care for patients with complex medical needs—at home and in healthcare settings. Resources from today's episode: Oley Foundation Infusing Hope Conference Join Oley for Community, Education, and so much more! Blended Tube Feeding Instagram Luma Clean Cares A SXSW Short Film on the reality of tube-feeding, called 'Unholy' Connect with Guests from Today's Episode: Kelsey Ward – Parent advocate and medical parent, Follow Kelsey on TikTok Brady Crandall – Parent advocate and founder of YouthCrews Alexa Quintero – Patient advocate and young adult with lived tube feeding experience Hilarie Geurink, RD – Pediatric dietitian specializing in flexible, real-food tube feeding, Founder of Blended Tube Feeding <p di

When your child's life is shaped by medical complexity, childhood can quickly become defined by hospital stays, procedures, and limitations. In today's episode, we explore how medically supported camps transform that narrative—creating space for joy, belonging, and healing for children, families, and even healthcare providers themselves. Katie Taylor is joined by Dr. Laura Blaisdell, Chief Medical Officer of SeriousFun Children's Network, and Jamie Gentille, Child Life Specialist Leader and former camper, to share the life-changing impact of camp for children with serious illnesses. From zip-lining with oxygen tubing to late-night cabin chats that build confidence and identity, this conversation highlights how thoughtfully designed camp experiences allow kids to be kids—without compromising medical safety. This episode explores the power of positive childhood experiences, how camps seamlessly integrate complex medical care behind the scenes, the role of child life specialists and medical volunteers in creating safe spaces for play, and why camp is just as healing for providers as it is for children. You'll also hear Jamie's personal journey from camper to child life specialist and why camp will always feel like home. Explore Child Life On Call's directory of medical and disability-friendly summer camps for kids! This resource helps families find inclusive summer camp options that support children with medical needs and disabilities, making it easier to plan fun, safe, and engaging summer experiences. Today's Episode is sponsored by Moog Medical. Moog Medical is a trusted leader in infusion and enteral feeding technology, designing reliable, easy-to-use pumps that support safe, precise care for patients with complex medical needs—at home and in healthcare settings. Resources from today's episode: Medical & Camp Support: SeriousFun Children's Network Hole in the Wall Gang Camp Painted Turtle Camp Medical volunteer opportunities through SeriousFun Connect & Support from Child Life On Call Subscribe: Never miss an episode on Apple

When your child survives one medical emergency only to face another, parenting becomes a constant act of advocacy and courage. Today's guest joins us to share her daughter's journey with rare and complex medical conditions, from early respiratory failure and unexplained hospitalizations to epilepsy, lung disease, and life with medical uncertainty. As a military spouse navigating deployments, Brittany shares what it means to walk this path largely alone, trust her instincts as a mother, and fight to be believed by medical professionals. This episode explores navigating rare disease without clear answers, the life-changing impact of compassionate child life support, supporting siblings through medical trauma, and how rituals, play, and community help families find hope and meaning in the midst of chaos. Download our free Children's Hospital Passport to help empower your child and family during hospital stays. Sponsored in part by HealthWell Foundation—learn how you can help families afford life-saving medications at healthwellfoundation.org.   Resources from today's episode: Medical Support:  Stanford Children's Health  Undiagnosed Diseases Network Nonprofit & Community Support: Live Like JoJo Foundation The Meg Foundation (Pediatric Pain & Poke Plans)  Brave Bears Club (Epilepsy Support) Child Life Mommy CHYP  Connect with Brittany Follow Brittany's journey as she shares life as a medical mom, military spouse, and advocate.    Connect & Support from Child Life On Call  Subscribe: Never miss an episode on Apple Podcasts or Spotify. Visit insidethechildrenshospital.com to easily search stories and episodes <l

When your newborn is healthy one moment and rushed to the PICU the next, life can change in an instant. Today's guest joins us to share her son's journey with severe hemophilia—from unexpected bleeding after a routine circumcision to a spontaneous brain bleed, emergency surgery, and a months-long PICU stay. This episode explores being thrust into medical motherhood, learning to advocate under unimaginable stress, and how community, child life, and modern medicine help families navigate life with a complex diagnosis. Download our free Children's Hospital Passport to help empower your child and family during hospital stays. Sponsored in part by HealthWell Foundation—learn how you can help families afford life-saving medications at healthwellfoundation.org. Resources Medical Support: Mayo Clinic Children's Center & Hemophilia Treatment Center, Rochester, MN Nonprofit & Community Support: Hemophilia Foundation of Minnesota & the Dakotas Connect with Sami Follow Sami and Cooper's journey on Instagram  Connect & Support from Child Life On Call  Subscribe: Never miss an episode on Apple Podcasts or Spotify. Visit insidethechildrenshospital.com to easily search stories and episodes Follow us on Instagram for updates and opportunities to connect with other parents Download SupportSpot: receive Child Life tools at your fingertips. Leave a Review: It helps other families find us and access our resources! Keywords: Severe hemophilia, Hemophilia in infants, Newborn hemophilia diagnosis, Infant brain bleed, Pediatric

When your child receives a new medical diagnosis, it can feel like the world shifts beneath your feet. Today's guest joins  Katie Taylor to share her daughter's Type 1 Diabetes journey—from dismissing "textbook" symptoms to navigating the financial challenges of families when it comes to chronic illness. This episode explores how one Mom moved from denial to "work mode" and how the HealthWell Foundation helps families afford life-saving medications. Sponsored in part by HealthWell Foundation—learn how you can help families afford life-saving medications at healthwellfoundation.org. Download our free Children's Hospital passport to empower your child to feel comfortable in the children's hospital. Resources Medical Support: Sanford Children's Hospital, Sioux Falls, SD. Nonprofit Support: HealthWell Foundation (Pediatric Assistance Grant). Community & Education: Children with Diabetes (10-year coins) and Stacey Simms (Diabetes Connections), Headstrong Foundation Connect with Alicia directly  Connect & Support Subscribe: Never miss an episode on Apple Podcasts or Spotify. Visit insidethechildrenshospital.com to easily search stories and episodes Follow us on Instagram for updates and opportunities to connect with other parents Download SupportSpot: receive Child Life tools at your fingertips.  Leave a Review: It helps other families find us and access our resources! Medical information provided is no

When your child receives a new medical diagnosis, it can feel like the world shifts beneath your feet. Here's how to move forward with clarity, support and connection, hosted by Katie Taylor and the Inside the Children's Hospital podcast. Listen to more stories at insidethechildrenshospital.com. Medical information provided is not a substitute for professional advice—please consult your care team. Sponsored in part by HealthWell Foundation—learn how you can help families afford life-saving medications at healthwellfoundation.org. Keywords:  children's hospital, NICU, child life specialist, pediatric healthcare, medical diagnosis, parental support, finding the right doctor, healthcare journey, patient-provider relationship, medical trauma, chronic illness, sibling dynamics, hospital stay tips, advocacy organizations, financial assistance, HealthWell Foundation, new diagnosis, community support, emotional coping, grief and hope, navigating insurance, parent self-care, psychosocial support, family-centered care, pediatric medication costs, medical play, patient education, online support groups, rare disease, healthcare communication, palliative care

If your child is facing a diagnosis, procedure, or hospitalization — you're not alone. Inside the Children's Hospital brings you real stories from parents who've walked this path. Not medical advice, but the kind of honest conversation you need when you're scared, exhausted, and looking for someone who gets it. I'm Katie Taylor, a Certified Child Life Specialist with 15 years supporting families through hard moments in pediatric healthcare. On this podcast, I interview caregivers who share what it's really like — the sleepless nights, the uncertainty, the small victories, the moments that break you and the ones that keep you going. You'll find yourself nodding along, regardless of your child's specific diagnosis. These are true lived experiences that remind you: other parents have felt this too, and there are ways through. Subscribe to find: → Stories from parents who understand → Practical coping strategies that have actually worked for families → Reassurance that what you're feeling is normal  → Community when you need it most This isn't a clinical lecture — it's parents talking to parents, with a child life specialist helping translate the experience. You're here because something hard brought you here. I'm glad you found us. 🎙️ New episodes every Wednesday 🌐 More resources: childlifeoncall.com and insidethechildrenshospital.com Medical Legal Disclaimer: This podcast is for informational purposes only and does not constitute medical advice. Always consult your healthcare provider for guidance about your child's health.

Feeling alone after your child's diagnosis? Discover three powerful lessons that have changed how families find hope, support, and confidence while navigating pediatric healthcare. In this solo episode, child life specialist Katie Taylor distills eight years of conversations with hundreds of families into three essential takeaways every parent needs when thrust into the pediatric healthcare world. If you're overwhelmed by medical decisions, uncertain about switching providers, or searching for ways to support your child—and yourself—during hospital life, this episode offers tangible steps and comforting wisdom. WHAT YOU'LL LEARN: - You are not "stuck" with your child's assigned doctor and can (and should) seek a provider who fits your family's needs - Open communication and advocating for yourself and your child are vital in every medical setting - Narrating medical experiences with your child helps prepare them, builds trust, and fosters resilience - Small acts of self-care are crucial to preserving your strength as a caregiver - Every family's coping strategy is valid; don't compare your self-care to what you see on social media TIMESTAMPS: 0:00 - Introduction & Podcast Purpose 0:37 - Wide Range of Diagnoses Covered 1:33 - Who This Podcast Is For 2:39 - Lesson 1: You're Not Stuck With Your Doctor 5:02 - Lesson 2: How Narrating Medical Experiences Supports Your Child 6:08 - Real-Life Story: Marley's Experience With Type 1 Diabetes 8:50 - Lesson 3: Redefining Self-Care for Medical Parents 10:25 - Simple Self-Care Strategies 11:41 - What's Coming in 2026 13:12 - Important Disclaimer RESOURCES: - Book: "Real Self-Care" by Dr. Pooja Lakshman - Marlee & Bain's Story on TikTok: @BainT1D - Effie Parks/Once Upon a Gene Podcast HOST: Katie Keating is a Certified Child Life Specialist who has spent over 15 years supporting families navigating pediatric medical experiences. CONNECT: Instagram: @childlifeoncall ⭐ Leave a review on Apple Podcasts or Spotify—your feedback helps us reach more families!

In this profoundly moving and honest conversation, we sit down with Jeff Loving, a NICU dad, husband, and now an author, who shares the intimate and often unspoken grief experienced by fathers after pregnancy loss. Jeff walks us through the heartbreaking loss of his two sons, Davian and Jadon, the struggle to find empathy and appropriate medical care, and how these experiences ultimately led him and his wife, Cassie, to become fierce advocates for their future family. This episode is a raw look at marriage under immense stress, the importance of empathetic medical staff, and the redemptive joy of welcoming their "double rainbow" daughter, Isla Grace. Jeff also discusses his mission to help other men through their grief by writing his book, Holding Onto the Light. Key Discussion Points & Timestamps Time Topic Key Takeaway 00:06 Meet Jeff Loving: Husband, NICU Dad, and Author Jeff introduces his family, including his dog, Sage, his wife, Cassie, and their NICU "double rainbow" baby girl, Isla Grace, reflecting on five years of marriage and three pregnancies. 01:08 The Loss of Davian (First Pregnancy) Jeff describes the initial shock and excitement of their first pregnancy, the sudden onset of symptoms at 19 weeks, and the devastating choice they faced in the hospital due to an infection: lose the baby, or risk losing both the baby and his wife. 04:55 The Cruel Disconnect of Grief Jeff recounts the soul-crushing moment of holding his son, Davian, as his heartbeat stopped. He shares the struggle of navigating intense grief while the world—and Thanksgiving—kept moving around them. 07:58 Finding Support: The Power of Presence The discussion turns to how his family supported them by simply being present, rather than offering platitudes like "it's God's plan." The importance of showing up for grieving parents is highlighted. 11:21 Empathetic vs. Detached Care Jeff praises the nurses who were a "calming presence in the chaos" and later attended Davian's service. Conversely, he shares a painful anecdote about a male doctor's detached and jovial demeanor, asking if he wanted to cut the cord after the loss. 15:51 What Compassion Looks Like in Care Jeff shares what he wished the doctor had said: "I know this is very hard... just know that my heart breaks for you, and I'm so sorry that you guys are going through this." This is a vital lesson for medical professionals. 16:55 Marriage Under Stress After moving to North Carolina for a fresh start, Jeff discusses how the loss put their marriage under extreme stress—it would either break t

Melanie, mom to 12-year-old Masen, shares the unexpected path to her son's diagnosis with Homocystinuria (HCU) after a routine eye exam revealed something "off." What followed was months of uncertainty, a rare diagnosis few providers had even heard of, a crash course in low-protein diets and metabolic formulas, and two back-to-back eye surgeries to prevent further damage. With gentleness, honesty, and deep advocacy, Melanie describes how they adjusted as a family, how Masen built resilience, and how finding community changed everything. A story of early detection, parent intuition, and the power of connection. Why this episode matters Rare disease reality: What it feels like to navigate a diagnosis most clinicians have never seen Caregiver intuition: How a parent's sense that "something isn't right" can spark life-saving action Practical communication: Age-appropriate ways to explain health changes, procedures & dietary needs Health equity & systems gaps: When newborn screening misses what should have been caught Hope forward: The resilience of kids—and the strength families build together What You'll Learn Early signs Masen showed (or didn't show) before diagnosis How a routine eye exam led to life-changing discoveries What HCU is, and why newborn screening only catches ~50% of cases How metabolic diets work—and why the formula is so hard for kids Talking to kids about scary changes in simple, honest language Navigating back-to-back eye surgeries How parents balance their own needs while supporting their child Building resilience without expecting perfection The power of community: conferences, meetups, Facebook groups Advocating for improved newborn screening for future families Timestamps 00:00 Meet Melanie & Masen: family intro, life in V

Tara Cohen opens up about her son Will's autism diagnosis and how it transformed her family and career. From navigating meltdowns to discovering AAC as a communication lifeline, Tara shares her honest reflections on parenting, resilience, and hope. What began as a search for a medical ID bracelet led to a career at Lauren's Hope—where she now helps other families feel safe and supported. This heartfelt episode reminds caregivers that advocacy grows from love and that even small acts of compassion can make a life-changing difference. Timestamps 00:00 – Introduction 03:10 – Early diagnosis and emotions 07:45 – Advocacy and ESE Pre-K 12:30 – Discovering Lauren's Hope 18:40 – Communication with AAC 25:15 – Managing epilepsy 31:00 – Finding silver linings 37:00 – Advice for caregivers Resources Mentioned Lauren's Hope Medical ID Jewelry ESE Pre-K (Florida early intervention) Temple Grandin (2010 film) Children's Mercy Kansas City (neurology and epilepsy care) Child Life On Call Resources Level up your parent toolkit with child life–expert guidance: 👉 Get SupportSpot on the App Store Want to hear insights from our host, Katie Taylor, Certified Child Life Specialist? 👉Subscribe to Katie's Substack Interested in being a guest or learning more about the podcast? Email us at [email protected] When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: <a href="https://childlifeoncall.com/su

"My baby went from fussy to lifeless in hours—by the time we reached the PICU, they said he might have had six hours to live." In this episode, TikTok Influencer and Medical Mom Marlee Brandon, a pediatric speech-language pathologist turned full-time mom, shares the whirlwind diagnosis of her 12-month-old son Bain with Type 1 diabetes and severe DKA, the traumatic hospital stay, and the everyday advocacy that followed. Raw, practical, and deeply hopeful. Why this episode matters Emotional clarity: what a Type 1 diagnosis really feels like in infancy Practical advocacy: scripts, choices, and language that help toddlers cope System gaps: when even major hospitals say "we've never seen this in a baby" Hope forward: raising a confident kid who knows why care matters What You'll Learn Early signs & ER visit: how "ear infection" symptoms masked T1D in a baby DKA in plain language: what "acidic blood" means and how PICU treats it The learning cliff: carb ratios, breastfeeding while dosing insulin, and why it's OK not to "get it" on day one Toddler coping: give choices, narrate care, build independence Rebuilding trust after mistakes: when training/tools aren't perfect Finding your people: groups, podcasts, and creators who answer "what now?" Timestamps 00:00 Meet Marlee (pediatric SLP → motherhood) 01:40 Why speech therapy & pediatrics 03:55 Bain turns one → sudden "ear infection" → nonstop vomiting 06:30 Small-town ER: "He has diabetes" (dismantling stereotypes)

Join us for an incredibly candid and informative conversation with Audrey Vernick, a passionate advocate and the Director of Patient and Family Advocacy for the Pediatric Epilepsy Surgery Alliance. Audrey shares the powerful 21-year journey of her son, Bennett, who suffered a stroke in utero and was later diagnosed with the catastrophic epilepsy known as Infantile Spasms. Audrey recounts the emotional process from the difficult labor and early concerns dismissed as normal reflexes, to the terrifying moment she saw his MRI and realized half of his brain was black due to a massive stroke. This episode is an essential listen for any parent navigating a serious pediatric diagnosis, especially those dealing with seizures. Audrey shares her family's ultimate decision to pursue a hemispherectomy after two years of failed medications, and the immediate, miraculous developmental explosion in her son's language and physical abilities post-surgery. Key Takeaways and Actionable Advice Trust Your Parental Instinct: If you think something is wrong with your child's movements, something probably is. Demand a Specialist: If you suspect Infantile Spasms, go to the ER and demand to speak to a neurologist or epileptologist. Request video EEG monitoring. Video & Log Everything: Record videos of suspicious movements and log details (time, duration, what you observed) to help clinicians with diagnosis and treatment planning. The Difference Between a Consult and Surgery: A surgical consult is not a surgery. Referring for a pre-surgical workup opens up a new toolbox of solutions and gives you access to a world-renowned team of specialists for a more detailed look at your child's case. Drug-Resistant Epilepsy (DRE): Epilepsy is considered DRE if a child has uncontrolled seizures after appropriately failing two seizure medications. This increases the risk of SUDEP (Sudden Unexplained Death due to Epilepsy). Decision-Making: Understanding your partner's decision-making style is crucial when navigating complex medical choices. Guest Information & Resources Guest: Audrey Vernick, Director of Patient and Family Advocacy at the Pediatric Epilepsy Surgery Alliance. Organization: Pediatric Epilepsy Surgery Alliance Website: epilepsysurgeryalliance.org. <p dir="ltr" role="p

"The excitement that the kids feel when they are seeing you... and they know today's session with Ms. Luba and they can't wait to see you." - Luba Kaplan When a child enters the medical system, parents often meet many specialists beyond doctors and nurses, including Speech-Language Pathologists (SLP). These professionals are vital members of the healthcare team, doing more than just helping with speech. SLPs, as Luba Kaplan explains, also explains how they look at every area of the child's development to ensure children are being fully supported. In this episode, we introduce Luba Kaplan, a passionate SLP, Oral Myofunction Therapist, and mother of three who is the visionary behind Kidology. Celebrating 10 years in private practice, Luba has made it her mission to bridge gaps in access to therapy. She even created the Therapy Bus—a half-size school bus that travels to families who can't leave home or have transportation issues. About Our Guest: Luba Kaplan, SLP Luba Kaplan is a Speech-Language Pathologist and Oral Myofunction Therapist. As the founder and owner of Kidology, she has built a practice that offers a multidisciplinary, team approach to therapy, including Speech, Occupational, Physical, and Behavioral services. Luba is driven by a deep passion for helping families achieve change and is dedicated to cancer research in honor of her mother, Angela, who worked in oncology research for 25 years. Luba on Social Media: TikTok, Instagram, Facebook: @KidologyInc (KIDOLOGYINC) YouTube Channel: Find Kidology's content on YouTube Key SLP Insights for Medical Parents Luba shares crucial advice for working effectively with a Speech-Language Pathologist: Build Strong Rapport: Share everything that is going on in your child's life, even seemingly small struggles like a supermarket meltdown. The more the provider knows, the more they can help. Look for a Global Approach: Seek a provider who utilizes a multidisciplinary, team approach and is willing to screen for or refer to other needed services (OT, PT, behavioral services). Early Intervention is Key: Don't wait or assume your child will simply "grow out of it.". Addressing issues sooner, not later, can put your child ahead. Ensure Family Alignment: Ever

When Stacey's toddler was diagnosed with Type 1 diabetes, her family's world turned upside down. In this episode, she shares the early warning signs, the struggle of those first two weeks of injections, and how humor and community turned fear into resilience. Parents will gain hope, advocacy tips, and coping strategies for managing a chronic illness diagnosis. What You'll Hear How Stacey recognized the 4 Ts of diabetes: Thirsty, Tired, Thinner, Toilet The reality of hospitalization, finger sticks, and injections with a toddler Coping strategies: medical play, humor, and routines that work The power of community and rejecting "perfect parenting" Building advocacy through Diabetes Connections and The World's Worst Diabetes Mom About Stacey Stacey Simms is an award-winning broadcaster, speaker, and author of The World's Worst Diabetes Mom. Since 2015, she has hosted Diabetes Connections, offering real stories and resources for the Type 1 community. 🔗 Diabetes Connections 🔗 Instagram @staceysimms Key Takeaways Advocate for more than a finger stick when symptoms appear Medical play & humor ease children's anxiety about procedures There's no "perfect parent"—safe and happy is enough Community matters, but it's okay to choose your people wisely Timestamps 00:00 – Introduction & Stacey's background 02:00 – Early signs of Type 1 diabetes (the 4 Ts) 06:00 – Hospital stay and first injections 10:00 – The hardest two weeks: shots, tears, and routine 15:00 – Teaching kids about diabetes as they grow 18:00 – Humor, medical play, and coping strategies 22:00 – Building Diabetes Connections & Moms' Night Out 25:00 – Lessons Stacey learned about herself 27:00 – The myth of perfect parenting Support the Host & Show If you found value in this conversation, please check out host Katie Taylor's work and community resources: Join Katie Taylor's Substack for in-depth insights and articles: <a href= "https://childlifealigned.substack.co

In this incredibly personal and moving episode, we sit down with Teejay and Jon, the authors of the gentle children's book Clemence, to share the full, raw story of their daughter, Nadiya. Their journey began with an unexpected connection—a transatlantic online romance between Teejay in Australia and Jon in Canada—that quickly turned into a marriage grounded in a shared life and purpose. With Teejay's extensive background in early childhood development and their experience fostering a young man with Down syndrome, they felt prepared when Nadiya was diagnosed with Trisomy 21 (Down syndrome) early in the pregnancy. However, Nadiya's complications were severe: a complete AVSD (Atrioventricular Septal Defect), a heart condition that made survival a constant battle. Teejay and Jon open up about the grueling reality of Nadiya's three-month, extended NICU stay. They speak candidly about the sheer exhaustion, the mental toll of the incessant alarms and machine noise, and the profound isolation of making life-and-death decisions under unimaginable pressure. We explore the difficult but necessary truth of grieving alongside a partner who processes loss in a completely different way. Jon, an extrovert, sought normalcy and company, while Teejay, an introvert, needed space and quiet isolation. They explain how establishing mutual respect and seeking professional counseling were the key foundations that saved their marriage during this seismic time. Finally, they share the powerful mission behind their book, Clemence. Written to honor Nadiya's memory, it provides a crucial tool for families, helping them talk to children about baby sibling loss. They reveal plans for a sequel to address the unique grief of the "neglected mourners"—the subsequent children born after a loss who never met their older sibling. This conversation is an essential listen for anyone in the NICU community, processing loss, or seeking resources for pediatric grief support. Note: We recognize this episode addresses Infant and Pregnancy Loss Awareness. We stand with all families who have experienced loss and hope this conversation brings comfort and community. Episode Highlights & Timestamps Time Topic 00:05:48 Nadiya's Diagnosis: Trisomy 21 and the severe complete AVSD Heart Condition. 00:07:07 The NICU Reality: Coping with the three-month extended stay and constant medical crisis. 00:11:05 Profound Kindness: The stranger's DoorDash order that helped them survive the crisis. 00:13:28 Nadiya's Spirit: Her curiosity, determination, and "badass" personality that charmed the nurses.

Is the "best" hospital just about technology and surgical success? Ben Harder, the journalist who oversees the methodology and data for the U.S. News Best Children's Hospitals Rankings (2025), joins Katie to break down what truly defines quality in pediatric care. Ben shares his deeply personal family story—a tragedy 50 years in the past that drives his commitment to making data-driven information accessible today. This episode is a crucial guide for parents, explaining the three core pillars of the rankings: structure/resources, processes of care, and patient outcomes. We dive into why essential human-focused services like Child Life Specialists, chaplains, and family advisory boards are included in the scorecard and how they influence the rankings. Ben illuminates the challenge faced by these vital "cost centers" in a revenue-driven healthcare system, and offers a powerful message: parents are the strongest possible advocates for their children, and they should use every resource available—including the U.S. News data—to make informed, collaborative choices for their child's care team. Guest Links U.S. News Best Children's Hospitals Rankings: All data is freely available for families to research hospitals by region and specialty. Website: US News Press Release Episode Highlights & Key Takeaways The Personal Motivation: Ben shares the heartbreaking story of his cousin, whose permanent brain injury after a heart surgery complication 50 years ago lacked the complete care team needed to ensure a good outcome—a void the U.S. News data is designed to fill today. The Three Pillars of Ranking: US News analyzes over 1,000 data points grouped into: 1) Resources/Structure (nurses, expertise, technology, child life services), 2) Processes of Care (following best practices, infection control), and 3) Outcomes (survival, length of stay, quality of life). The Honor Roll: The 2025 Honor Roll features the top 10 hospitals recognized for high performance across multiple specialties, including: Boston Children's Hospital, The Children's Hospital of Philadelphia (CHOP), Cincinnati Children's, Texas Children's Hospital, and others. A Piece of the Puzzle: The rankings are one resource to use alongside insurance coverage, geographic location, and most importantly, consulting your child's doctors and tru

Psychologist and heart-transplant recipient Dr. Brittany Clayborne shares how her own medical journey prepared her to guide her son Micah through sudden heart failure, an LVAD, and a life-saving transplant. She unpacks the family's rare Danon's disease diagnosis, post-transplant cancer (PTLD), and the everyday realities after transplant—meds, setbacks, and hope. You'll learn Dr. Brittany's BRAVE framework for hard moments, how rituals sustain connection during long hospital stays, and how Micah turned his experience into action with Transplant Teens and My Brave Journal. This conversation is packed with concrete tools, compassion, and the reminder that "hope is a team sport." You do not want to miss this week's episode. Featured moments: 00:00 — Why families need "somewhere to be brave." 04:50 — Brittany's peripartum cardiomyopathy, ICU wait, and LVAD. 10:05 — PTLD diagnosis and becoming the psychologist she needed. 12:50 — Micah's chest pain → HCM crisis and transplant path. 24:00 — The BRAVE acronym families can use today. 44:00 — "Hope is a team sport." Transplant Teens' vision. Key takeaways: Use BRAVE in tough conversations: Breathe • Realize feelings • Accept them • Vent/Vulnerable with a trusted person • Elevate above it. Build predictable touchpoints (calls/visits) to anchor kids during long hospitalizations. Teens heal better with peers; if the group doesn't exist yet, create it. Resources mentioned: Transplant Teens (free peer support for grades 7–12) Transplant Teens Instagram My Brave Journal (and transplant edition) by Micah — on Amazon. Contact Dr. Brittany: @DrBrittanySpeaks; offers limited free virtual sessions with referrals for ongoing care. 📲 Get

In this episode of Child Life On Call, guest Maite Rodriguez shares her daughter Alessia's inspiring journey with sickle cell disease (SCD)—from diagnosis at birth and painful crises to finding a cure through a pediatric bone marrow transplant at Memorial Sloan Kettering. Maite discusses the challenges of long-term treatments like hydroxyurea, the emotional toll of hospitalizations, and her family's decision to pursue IVF to create a genetic match. She also introduces her bilingual children's book, Just Like the Moon, which helps families explain sickle cell to children, siblings, and communities. ⏱️ Episode Timestamps 00:05 – Newborn diagnosis and the first sickle cell pain crisis 09:00 – Daily medications: penicillin, folic acid, and hydroxyurea 20:00 – How advocacy, research, and community support make a difference 25:00 – Considering a cure: bone marrow transplant and IVF journey 31:00 – Why Memorial Sloan Kettering was chosen for Alessia's transplant 41:00 – Life after transplant: cured of sickle cell, dancing in the rain 48:00 – Writing Just Like the Moon, a bilingual sickle cell book for kids 📚 Resources Mentioned Just Like the Moon, a book written by Maite Rodriguez Sickle Cell 101 Memorial Sloan Kettering Pediatric Bone Marrow Transplant Program Sickle Cell Consortium – Resources & Advocacy Ronald McDonald House Chari

From "colic" that never eased to four pages of confirmed allergens, Susanna Peace Lovell recounts the first years of parenting her daughter, Arizona—years marked by nonstop crying, full-body eczema, and relentless advocacy. When a hypoallergenic formula finally brought relief around 18–19 months, Susanna could breathe—and begin reframing motherhood with compassion for her child and herself. She shares practical allergy survival tips (from table toppers to EpiPens), how autism diagnosis informed self-advocacy, and why community through We Are Brave Together mattered. This conversation serves as a guidepost for any parent navigating complex medical needs while preserving joy at home. You won't want to miss Katie and Susanna's conversation. Episode Timestamps: [03:45] Signs of Severe Food Allergies in Infants – From nonstop crying to full-body eczema, Susanna shares the earliest symptoms Arizona showed. [08:15] How Doctors Diagnosed Multiple Severe Food Allergies – The long journey to four pages of allergy results and what that meant for daily life. [18:30] Switching to Hypoallergenic Formula – How finding the right formula finally brought relief after months of suffering. [22:45] Tips for Parents Navigating Severe Food Allergies – Compassion, picky eating strategies, and surviving dining out with kids. [26:50] Teaching Kids Self-Advocacy with Food Allergies – How Arizona learned to protect herself and why autism shaped that process. [30:40] Finding Support for Parents of Kids with Severe Allergies – The role of We Are Brave Together and community in surviving medical parenthood. Resources mentioned: We Are Brave Together (caregiver community Jessica Patay founded). Susanna's Website Follow Susanna on Instagram 🎉 Special Thank You for Our Listeners! 🎉 We're giving you free access to our most popular pediatric masterclasses — How to Prepare, Support, and Respond to Your Child During Shots, Blood Draws, and Vaccines and How to Use Comfort Positioning in Pediatrics — a $250 value, completely free! All you have to do is leave a w

In this episode, Dr. Allison Mell—pediatric PT and founder of Tots on Target—breaks down how therapy for kids doesn't have to feel overwhelming. She shares real talk about what progress actually looks like, why play is so powerful, and how parents can weave therapy into everyday life without adding stress. From NICU graduates to toddlers finding their stride, Allison reminds us that tiny wins build up to big milestones. Her approachable, down-to-earth advice helps parents feel supported, capable, and ready to advocate for their child's needs. Resources mentioned: Tots on Target Website Tots on Target Instagram Page 🎉 Special Thank You for Our Listeners! 🎉 We're giving you free access to our most popular pediatric masterclasses — How to Prepare, Support, and Respond to Your Child During Shots, Blood Draws, and Vaccines and How to Use Comfort Positioning in Pediatrics — a $250 value, completely free! All you have to do is leave a written review of the Child Life On Call podcast on Apple Podcasts or Spotify, then email a screenshot of your review to [email protected]. Once we receive it, you'll get instant access to both courses — no strings attached. It's our way of saying thank you for listening and helping more parents discover our show. 💛 The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided. Keywords: pediatric physical therapy, Tots on Target, Dr. Allison Mell, child development milestones, medically complex children, parent advocacy, play-based therapy, NICU graduates, torticollis, comfort positioning, early intervention, family-centered care, Child Life On Call</p

When Camryn's fearless 4-year-old suddenly became anxious, her gut said something deeper was wrong. Multiple "all clear" evaluations followed—until a post-virus crash at age 6 that led to a diagnosis under the PANS/PANDAS umbrella (autoimmune encephalitis). Camryn shares how a steadfast pediatrician, early referrals, and balancing clinical guidance with peer support helped her daughter reclaim everyday life—right down to summer swim league. She also opens up about protecting her child's privacy, supporting siblings, starting trauma therapy, and building margin for joy. This is a masterclass in parental advocacy, nervous-system care, and creating a trusted circle around your child. Y Resources mentioned   PANDAS Parents (national Facebook community) — peer support and practical tips. ASPIRE (clinical education & navigation for PANS/PANDAS). MomBrain.com — anonymous Q&A platform for moms (Camryn is co-founder). School-based supports (counselor, principal, buddy programs) for siblings.   🎉 Special Thank You for Our Listeners! 🎉 We're giving you free access to our most popular pediatric masterclasses — How to Prepare, Support, and Respond to Your Child During Shots, Blood Draws, and Vaccines and How to Use Comfort Positioning in Pediatrics — a $250 value, completely free! All you have to do is leave a written review of the Child Life On Call podcast on Apple Podcasts or Spotify, then email a screenshot of your review to [email protected]. Once we receive it, you'll get instant access to both courses — no strings attached. It's our way of saying thank you for listening and helping more parents discover our show. 💛     The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures

In this reposted episode, Courtney shares her journey of receiving her daughter Annie's Trisomy 21 diagnosis, navigating the NICU, and walking through open-heart surgery complicated by pulmonary hypertension. She talks about the power of community, the unexpected strength she discovered in herself, and how vulnerability and advocacy have shaped her motherhood. Courtney reminds us that love, connection, and collective wisdom can carry families through the hardest seasons while celebrating Annie's resilient and joyful spirit. Resources mentioned in this episode: Annie Louise Foundation – A resource hub for parents and caregivers Follow Courtney on Instagram Read Courtney's most recent blog post about how the Annie Louise Foundation helped with Central Texas Flood relief in Kerrville, TX 🎉 Special Thank You for Our Listeners! 🎉 We're giving you free access to our most popular pediatric masterclasses — How to Prepare, Support, and Respond to Your Child During Shots, Blood Draws, and Vaccines and How to Use Comfort Positioning in Pediatrics — a $250 value, completely free! All you have to do is leave a written review of the Child Life On Call podcast on Apple Podcasts or Spotify, then email a screenshot of your review to [email protected]. Once we receive it, you'll get instant access to both courses — no strings attached. It's our way of saying thank you for listening and helping more parents discover our show. 💛 Keywords: Down Syndrome, Trisomy 21, congenital heart defect, VSD, pulmonary hypertension, NICU, ECMO, parent advocacy, child life, Spoony Threads, SupportSpot The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the pod

Tuberous Sclerosis Complex, epilepsy in children, and autism parenting—in this powerful episode, women's health coach and mom of four, Erin Trier, shares her family's eight-year journey to finally receiving a TSC diagnosis for her son, Brendan.   She talks about the early seizures, navigating a rare genetic disorder, and managing the added challenges of autism and uncontrolled epilepsy. Erin opens up about the emotional and mental toll, the power of vulnerability, and the practical organization systems that help her family thrive—including her genius laundry strategy. She also shares why self-care, community connection, and support are essential for parents raising a medically complex child. You will not want to miss this episode.   Resources Mentioned: Erin's website: www.erintrier.com Instagram Podcast: Empowered in Health   🎉 Special Thank You for Our Listeners! 🎉   We're giving you free access to our most popular pediatric masterclasses — How to Prepare, Support, and Respond to Your Child During Shots, Blood Draws, and Vaccines and How to Use Comfort Positioning in Pediatrics — a $250 value, completely free! All you have to do is leave a written review of the Child Life On Call podcast on Apple Podcasts or Spotify, then email a screenshot of your review to [email protected].   Once we receive it, you'll get instant access to both courses — no strings attached. It's our way of saying thank you for listening and helping more parents discover our show. 💛  Keywords: Tuberous Sclerosis Complex, TSC diagnosis story, rare genetic disorder, seizure disorder, epilepsy in children, autism parenting, medically complex child, women's health coach, parenting tips, self-care for parents, family organization, SupportSpot app, parent mental health, coping strategies, special needs parenting, rare disease awareness. The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible f

Victoria Garcia—lovingly known as "Nurse Vic"—shares her powerful journey as a nurse and mom of two, including her daughter Julia, who was diagnosed with achondroplasia during pregnancy. In this heartfelt episode, Victoria opens up about the emotional and logistical challenges of navigating a rare diagnosis while working at the very hospital where she received the news. She talks about the strength she found in community, the importance of informed advocacy, and what it truly means to be in alignment with your purpose. 🎧 This is an inspiring listen for any parent facing a diagnosis or anyone who supports families in medical settings. Resources Mentioned: Victoria's landing page: www.shortlongbones.com 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 → childlifeoncall.com/app 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 → childlifeoncall.com/childlifecircle 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.  </s

In this moving and hope-filled episode, mother-daughter duo Quinn Wyatt and Kirby Larson share the deeply personal story behind their middle grade novel, Gut Reaction. Diagnosed with Crohn's disease as a teen after years of being dismissed, Quinn opens up about her experience living with a misunderstood chronic illness. Kirby, an acclaimed author, reveals what it took to revisit this painful chapter of their lives and co-write a book that helps kids feel seen. Together, they explore diagnosis delays, self-advocacy, parenting through illness, and how their storytelling became a form of healing and community connection. Resources Mentioned: Gut Reaction by Quinn Wyatt and Kirby Larson Crohn's & Colitis Foundation – https://www.crohnscolitisfoundation.org/ Learn more: https://gutreactionbook.com 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 → childlifeoncall.com/app 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 → childlifeoncall.com/childlifecircle The Circle is where child life professionals come together for real talk, resources, and rejuvenation. Keywords: Crohn's disease, chronic illness in kids, middle grade books, parent advocacy, child life, invisible illness, IBD, Camp Oasis, Kirby Larson, Gut Reaction book, diagnosis journey, storytelling therapy, chronic illness support, medical parenting, Child Life On Call Podcast <p data-start="1271" data-end="1556" data

"What started as a terrifying diagnosis became a mission to help other families feel seen, supported, and brave." – Kate, founder of Brave Bears Club In this reposted and newly updated episode, we revisit Kate's emotional and empowering story as she shares her daughter Charlotte's unexpected diagnosis of infantile spasms (IS) at 22 months old. What began as a terrifying medical journey transformed into an advocacy movement—Brave Bears Club—that now supports children with pediatric epilepsy around the world. Kate reflects on the early signs of IS, how her instincts as a mom led to a critical diagnosis, and what life has looked like navigating treatments, therapies, and the unknown. You'll also hear how she turned her experience into tangible tools of hope: an inclusive children's book and EEG comfort bear to prepare kids for their medical experiences. Key Takeaways: ✅ Learn the early warning signs of infantile spasms ✅ Hear how Kate coped while pregnant with her second child ✅ Understand the emotional rollercoaster of IS treatment ✅ Discover how play and preparation inspired the Brave Bears Club ✅ Get practical advice from a parent-turned-advocate Timestamps: [03:00] Meet Kate: From Massachusetts to Colorado and back again [04:00] Diagnosis during pregnancy: Receiving life-changing news at 8 months pregnant [06:00] Trusting her mom instinct and the challenge of being dismissed [08:00] What to watch for: Rhythmic, involuntary movements and why video is essential [11:30] Comparing IS to SIDS awareness and the need for change [15:00] Two-thirds of kids don't respond to first treatments—Kate's road to success [18:30] Creating the book: Helping Charlotte and others understand IS [25:00] Turning fear into empowerment through play and preparation [30:00] Where to find the book and stay updated on Brave Bears Club 🧸 Resources from Kate: <ul data-st

"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: thebutterflypig.com Instagram: @thebutterflypig 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

"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. Learn more about our members 🔑 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 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: https://www.childlifedisasterrelief.org 📚 Flooding & Crisis Resource Hub for Parents and CCLS: https://childlifeoncall.com/hillcountryfloods <p data-start="1805" data-e

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. What we talk about: 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: [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 s

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 p

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 their website 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 <li d