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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. 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 your gift. Thank you for being part of this journey with us 💛 Resources & Ways to Connect  Connect with Kaleigh on Instagram Facebook Meningitis Support Group   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 Download SupportSpot: receive Child Life tools at your fingertips. Leave a Review: It helps other families find us and access our resources! Medical information provided is not a substitute for professional advice—please consult your care team. Keywords: bacterial meningitis child story, pediatric brain hemorrhage, delayed diagnosis child illness, parenting through medical trauma, child life support hospital, pediatric emergency story, advocating for your child medical care, cochlear implant child, hearing loss after meningitis, navigating pediatric hospitalization, medical parent journey, trusting parental instincts

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 Follow us on Instagram for updates and opportunities to connect with other parents Download SupportSpot: receive Child Life tools at your fingertips. Leave a Review: It helps other families find us and access our resources! Medical information provided is not a substitute for professional advice—please consult your care team.   Keywords: parent cancer child support, talking to kids about cancer, caregiver mental load, parenting through illness, child life specialist support, family coping with cancer, grief and parenting, pediatric emotional support, supporting children through loss, caregiver burnout, trauma-informed parenting, childhood understanding of illness, cancer impact on families  

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 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 Download SupportSpot: receive Child Life tools at your fingertips. Leave a Review: It helps other families find us and access our resources! Medical information provided is not a substitute for professional advice—please consult your care team. Keywords: spinal muscular atrophy, SMA child story, rare disease diagnosis child, delayed milestones baby, parenting medically complex child, rare disease advocacy, navigating pediatric diagnosis, EMG test child, pediatric neuromuscular disease, child life coping tools, supporting child through medical tests, rare disease parent support, medical parent journey, hope after diagnosis    

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!  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 Download SupportSpot: receive Child Life tools at your fingertips. Leave a Review: It helps other families find us and access our resources!   Disclaimer: Medical information shared in this episode is not a substitute for professional advice. Please consult your care team for guidance specific to your child. Keywords: hypoxic ischemic encephalopathy, HIE baby story, NICU brain injury, medical dad perspective, parenting child with disabilities, pediatric brain injury journey, adaptive products for kids, inclusive design children, youth crews diapers, special needs parenting support, early intervention services, disability advocacy parenting, medically complex child parenting, child life support tools

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 Download SupportSpot: receive Child Life tools at your fingertips. Leave a Review: It helps other families find us and access our resources! Medical information provided is not a substitute for professional advice—please consult your care team. Keywords: pediatric ENT surgeon, tonsillectomy preparation for kids, preparing children for surgery, pediatric airway specialist, parenting medically complex children, doctor-patient partnership, advocating for your child in healthcare, pediatric surgery preparation, airway disorders in children, Breathless Dr. Tali Lando, medical memoir pediatric surgeon, supporting families in pediatric healthcare  

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. Visit insidethechildrenshospital.com to search stories and episodes easily Follow us on Instagram for updates and opportunities to connect with other parents Download SupportSpot: receive Child Life tools at your fingertips. Leave a Review: It helps other families find us and access our resources! Medical information provided is not a substitute for professional advice—please consult your care team. Keywords: pediatric kidney transplant, life after transplant child, dialysis in children, kidney disease in kids, transplant rejection treatment, pediatric transplant recovery, living donor kidney transplant, children's transplant initiative housing, transplant parent story, caring for medically complex child, pediatric kidney failure journey, transplant family support, child life coping tools, parenting through pediatric illness.

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 to search stories and episodes easily Follow us on Instagram for updates and opportunities to connect with other parents Download SupportSpot: receive Child Life tools at your fingertips. Leave a Review: It helps other families find us and access our resources! Medical information provided is not a substitute for professional advice—please consult your care team.   Keywords: NICU trauma, healing after NICU, NICU parent mental health, NICU journaling prompts, birth trauma support, NICU loss support, perinatal mental health therapist, processing NICU experience, life after NICU discharge, NICU storytelling, guided journal for NICU parents, neonatal intensive care support, grief after NICU, NICU parent resources  

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 Please note: Some organizations have private social media groups. For more information on those, you are welcome to private message Kelly Kemp.   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 Download SupportSpot: receive Child Life tools at your fingertips. Leave a Review: It helps other families find us and access our resources! Medical information provided is not a substitute for professional advice—please consult your care team.  

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 Download SupportSpot: receive Child Life tools at your fingertips. Leave a Review: It helps other families find us and access our resources! Medical information provided is not a substitute for professional advice—please consult your care team.   Keywords: physical differences in children, limb difference support, burn survivor child, surgical scars in kids, hair loss from chemotherapy, child life specialist, five cent story, five dollar story, resilience in children, bullying vs curiosity, parenting medically complex child, body confidence in kids, hospital to home transition, psychosocial support for families, sibling advocacy, Little Lighthouses Child Life

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 Download SupportSpot: receive Child Life tools at your fingertips. Leave a Review: It helps other families find us and access our resources! Medical information provided is not a substitute for professional advice—please consult your care team. Keywords: micro preemie, NICU journey, 25 week preemie, medically complex child, chronic lung disease in children, antepartum hospitalization, emergency C-section, sibling support in NICU, child life specialist, Ronald McDonald House, Hand to Hold, March of Dimes, NICU discharge, parenting after the NICU, medical motherhood, resilience in children, premature birth support, Midwest NICU mom

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 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 Download SupportSpot: receive Child Life tools at your fingertips. Leave a Review: It helps other families find us and access our resources!   Keywords: Tube feeding awareness, G-tube parenting, NG tube experience, GJ tube support, Medical parent advocacy, Pediatric nutrition support, Blended tube feeding, Real food tube feeding, Feeding tube myths, Medical trauma and advocacy, Young adult chronic illness, Child life support, Family-centered care, Hospital parent support, Living with feeding tubes Medical information provided is not a substitute for professional advice—please consult your care team.

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 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 Download SupportSpot: receive Child Life tools at your fingertips. Leave a Review: It helps other families find us and access our resources! Keywords: Medically complex children, Pediatric medical camps, SeriousFun Children's Network, Child life specialist, Positive childhood experiences, Pediatric chronic illness support, Medical trauma healing, Camp for children with illness, Family-centered care, Pediatric resilience, Provider burnout prevention, Therapeutic play, Sibling support, Pediatric healthcare community Medical information provided is not a substitute for professional advice—please consult your care team  

When your child survives one medical emergency only to face another, parenting becomes a constant act of advocacy and courage. Today's guest joins us to share her daughter's journey with rare and complex medical conditions, from early respiratory failure and unexplained hospitalizations to epilepsy, lung disease, and life with medical uncertainty. As a military spouse navigating deployments, Brittany shares what it means to walk this path largely alone, trust her instincts as a mother, and fight to be believed by medical professionals. This episode explores navigating rare disease without clear answers, the life-changing impact of compassionate child life support, supporting siblings through medical trauma, and how rituals, play, and community help families find hope and meaning in the midst of chaos. Download our free Children's Hospital Passport to help empower your child and family during hospital stays. Sponsored in part by HealthWell Foundation—learn how you can help families afford life-saving medications at healthwellfoundation.org.   Resources from today's episode: Medical Support:  Stanford Children's Health  Undiagnosed Diseases Network Nonprofit & Community Support: Live Like JoJo Foundation The Meg Foundation (Pediatric Pain & Poke Plans)  Brave Bears Club (Epilepsy Support) Child Life Mommy CHYP  Connect with Brittany Follow Brittany's journey as she shares life as a medical mom, military spouse, and advocate.    Connect & Support from Child Life On Call  Subscribe: Never miss an episode on Apple Podcasts or Spotify. Visit insidethechildrenshospital.com to easily search stories and episodes Follow us on Instagram for updates and opportunities to connect with other parents Download SupportSpot: receive Child Life tools at your fingertips. Leave a Review: It helps other families find us and access our resources!   Keywords: Rare disease parenting, Medical motherhood, Medically complex child, Pediatric lung disease, Pediatric epilepsy, Intractable epilepsy, PICU parent experience, Military family healthcare, Parent advocacy in healthcare, Child life specialist support, Sibling support during hospitalization, Parenting after medical trauma, Coping with chronic illness, Undiagnosed disease journey, Hospital parent support Medical information provided is not a substitute for professional advice—please consult your care team  

When your newborn is healthy one moment and rushed to the PICU the next, life can change in an instant. Today's guest joins us to share her son's journey with severe hemophilia—from unexpected bleeding after a routine circumcision to a spontaneous brain bleed, emergency surgery, and a months-long PICU stay. This episode explores being thrust into medical motherhood, learning to advocate under unimaginable stress, and how community, child life, and modern medicine help families navigate life with a complex diagnosis. Download our free Children's Hospital Passport to help empower your child and family during hospital stays. Sponsored in part by HealthWell Foundation—learn how you can help families afford life-saving medications at healthwellfoundation.org. Resources Medical Support: Mayo Clinic Children's Center & Hemophilia Treatment Center, Rochester, MN Nonprofit & Community Support: Hemophilia Foundation of Minnesota & the Dakotas Connect with Sami Follow Sami and Cooper's journey on Instagram  Connect & Support from Child Life On Call  Subscribe: Never miss an episode on Apple Podcasts or Spotify. Visit insidethechildrenshospital.com to easily search stories and episodes Follow us on Instagram for updates and opportunities to connect with other parents Download SupportSpot: receive Child Life tools at your fingertips. Leave a Review: It helps other families find us and access our resources! Keywords: Severe hemophilia, Hemophilia in infants, Newborn hemophilia diagnosis, Infant brain bleed, Pediatric hemophilia, Medical motherhood, PICU parent experience, Emergency brain surgery infant, Rare disease parenting, Bleeding disorders in babies, Hemophilia treatment center, Parent advocate in healthcare, Life after a NICU or PICU stay, Medically complex child, Child life specialist support, Coping with a chronic diagnosis, Parenting after medical trauma, Hemophilia A awareness, Infant seizures medical emergency, Hospital parent support Medical information provided is not a substitute for professional advice—please consult your care team.

When your child receives a new medical diagnosis, it can feel like the world shifts beneath your feet. Today's guest joins  Katie Taylor to share her daughter's Type 1 Diabetes journey—from dismissing "textbook" symptoms to navigating the financial challenges of families when it comes to chronic illness. This episode explores how one Mom moved from denial to "work mode" and how the HealthWell Foundation helps families afford life-saving medications. Sponsored in part by HealthWell Foundation—learn how you can help families afford life-saving medications at healthwellfoundation.org. Download our free Children's Hospital passport to empower your child to feel comfortable in the children's hospital. Resources Medical Support: Sanford Children's Hospital, Sioux Falls, SD. Nonprofit Support: HealthWell Foundation (Pediatric Assistance Grant). Community & Education: Children with Diabetes (10-year coins) and Stacey Simms (Diabetes Connections), Headstrong Foundation Connect with Alicia directly  Connect & Support Subscribe: Never miss an episode on Apple Podcasts or Spotify. Visit insidethechildrenshospital.com to easily search stories and episodes Follow us on Instagram for updates and opportunities to connect with other parents Download SupportSpot: receive Child Life tools at your fingertips.  Leave a Review: It helps other families find us and access our resources! Medical information provided is not a substitute for professional advice—please consult your care team. Keywords: Type 1 Diabetes, T1D diagnosis, HealthWell Foundation, pediatric healthcare, medical financial assistance, insulin costs, child life specialist, diabetes symptoms in kids, middle class healthcare help, medical debt, Dexcom, Omnipod, childhood chronic illness, parenting a diabetic child, Sanford Childrens Hospital, co-pay assistance, pediatric grants, medical parenting, T1D symptoms, diabetes advocate.