235: A Mother’s Journey of Love, Loss, and Resilience (crohn's and ulcerative colitis) - Kathy's Story
Inside the Children's Hospital
Release Date: 11/20/2024
When the Hospital Stay Ends: Understanding Pediatric Medical Traumatic Stress
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....
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From Pharmacist to Mom: Navigating Type 1 Diabetes and Celiac Disease
Inside the Children's Hospital
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...
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A NICU Dad Story: Life After a 25 Week Premature Birth
Inside the Children's Hospital
“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...
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Tay-Sachs Disease: A Father’s Story of Diagnosis, Parenting, and Purpose
Inside the Children's Hospital
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...
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Why Hospital Continuity and Staff Support Are Critical: Parents Speak Out
Inside the Children's Hospital
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...
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Trisomy 13: Challenging the Narrative and Choosing Hope
Inside the Children's Hospital
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...
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NICU, Trach and Home Care: One Family's Journey to Stability
Inside the Children's Hospital
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...
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Meningitis in Children: When a Mother's Instinct Led to Life-Saving Answers
Inside the Children's Hospital
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...
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When a Parent Has Cancer: What Kids Understand Before We Say It
Inside the Children's Hospital
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 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...
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Spinal Muscular Atrophy (SMA): A Parent’s Journey from First Signs to Diagnosis
Inside the Children's Hospital
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...
info_outline“If anybody was to ask me what is one of my biggest strengths, I have to tell them it's resilience… You can throw almost anything at me and I can handle it. I mean, there isn't anything any bigger in this world than losing a child.”-Kathy
In this heartfelt episode, Katie Taylor sits down with Kathy, a mother who shares her journey of raising and caring for her daughter Lauren through multiple medical challenges and eventual passing. Kathy’s story is both heart-wrenching and inspiring. Kathy reflects on the emotional, physical, and logistical challenges of managing long hospital stays, becoming a caregiver to a child with complex medical needs, and balancing self-care amid unimaginable circumstances. Her insights on resilience, self-advocacy, and the deep bond with her daughter provide comfort and inspiration. Kathy’s story is a powerful reminder of the strength it takes to navigate pediatric healthcare, turning pain into purpose, and the lasting impact of a parent's love.
"I was there when that beautiful creature wandered into my life, and I was there when she drifted out." – Kathy
Key Insights:
The Importance of Self-Care: Kathy emphasizes the need to care for oneself to better support a sick child and encourages parents to take breaks from the hospital without guilt.
Parent as Advocate: Transitioning into the role of a medical advocate for her daughter, Kathy highlights how training, learning, and persistence made a difference in Lauren’s care.
Finding Strength in Connection: Kathy discusses the vital role of family, friends, and small acts of kindness in sustaining her during Lauren’s long hospital stays.
Maintaining Normalcy: From packing business-casual clothes to involving Lauren in picking outfits, Kathy underscores the importance of preserving a sense of normalcy amid medical chaos.
Legacy of Resilience: Kathy’s advocacy didn’t end with Lauren’s passing; she continues to support others by sharing her story and working on resources for long hospital stays.
A HUGE thank you to our sponsors:
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Resources and Tips:
Support Spot App: Tailored guidance for families navigating medical experiences. Learn more
When parents feel empowered, everyone wins – kids thrive and the care team excels!
Learn more here.
Meet the host:
Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.