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Inside the Children's Hospital

Inside the Children's Hospital

Written by: Katie Taylor Certified Child Life Specialist
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 Inside the Children's Hospital shares real stories from parents, caregivers, and pediatric healthcare professionals navigating the emotional realities of caring for a hospitalized child with honesty, compassion, and hope.2026 Child Life On Call® Hygiene & Healthy Living Parenting Physical Illness & Disease Relationships
Episodes
  • Why Hospital Continuity and Staff Support Are Critical: Parents Speak Out

    Why Hospital Continuity and Staff Support Are Critical: Parents Speak Out
    May 7 2026
    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

    • Inside the Children's Hospital Podcast

    • Brave Bears Co

    • Medical Moms of NICU

    • iROC Research Studies

    • MedicalMom Tips & Resources

    Connect with the Guests:

    • Lyndsey Fedorko - LinkedIn | Instagram

    • Kate Kostolansky - LinkedIn

    • Tanisha Wormley - LinkedIn

    • Follow Katie Taylor for more insights

    This episode highlights how sharing personal journeys fosters community, advocacy, and system improvements—empowering families to be active participants in healthcare.

    Instagram.com/childlifeoncall

    The Inside the Children's Hospital podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided.
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    56 mins
  • Trisomy 13: Challenging the Narrative and Choosing Hope

    Trisomy 13: Challenging the Narrative and Choosing Hope
    May 6 2026
    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 siblings adapt and grow in families with high medical needs Why "quality of life" is subjective and should center the family's perspective Key Takeaway A diagnosis does not define a child's life—and when families are given the space, support, and information to make informed decisions, they can create a path filled with joy, connection, and meaning. Resources Mentioned SOFT (Support Organization for Trisomy 13, 18, and Related Disorders) Extra to Love Hope for Trisomy Emersynn Isla Shining Star Foundation Asher's Answer Trisomy 13 & 18 Parent Support Groups (Facebook communities) Understanding Trisomy 13 Genetic and Rare Diseases Information Center (GARD) https://rarediseases.info.nih.gov AAP Article: Guidance for Caring for Infants and Children with Trisomy 13 Follow Charlotte on Facebook This episode is a powerful reminder that behind every diagnosis is a child, a family, and a story that deserves to be fully seen and understood. If you liked this episode, listen to these Inside the Children's Hospital Episodes: A daughter with Trisomy 18 Trisomy 21 Story 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! The medical information provided is not a substitute for professional advice; please consult your healthcare team. Key Search Terms Trisomy 13, Patau syndrome, Trisomy 13 prognosis, Trisomy 13 life expectancy, Trisomy 13 baby thriving, Trisomy 13 and 18 support, SOFT organization Trisomy, NIPT high risk results, amniocentesis Trisomy 13, medical advocacy NICU, DNR without consent NICU, hospital transfer NICU, medically complex child at home, trach and ventilator at home baby, pediatric rare diagnosis, child life specialist NICU siblings, NICU sibling visits, postpartum depression NICU, Trisomy 13 quality of life, rare chromosome disorder support, AAP Trisomy 13 standards of care
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    1 hr
  • NICU, Trach and Home Care: One Family's Journey to Stability

    NICU, Trach and Home Care: One Family's Journey to Stability
    Apr 29 2026
    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 from grief to gratitude over time Key Takeaways Even in the most overwhelming moments, support, advocacy, and connection can carry families forward—and help transform crisis into a new kind of strength. Connect with Marah Instagram: In Good Complexity Resources Mentioned Emergency Preparedness for Families Infant & Child CPR (American Red Cross) https://www.redcross.org/take-a-class/cpr/performing-cpr/child-baby-cpr Trach & G-Tube Care Resources Feeding Tube Awareness Foundation https://www.feedingtubeawareness.org Building Community & Support Parent to Parent USA https://www.p2pusa.org Trach Support Mom's of Trach Babies https://www.facebook.com/groups/momsoftrachbabies/ 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. Pediatric Health, Medical Parenting, NICU Journey, Infant Cardiac Arrest, Medically Complex Child, Children's Hospital, Pediatric Critical Care, Family-Centered Care, Patient Advocacy, Tracheostomy, G-Tube Feeding, Epilepsy in Children, Special Needs Parenting, Caregiver Support, Resilience
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    48 mins
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