Episode 196 | Hannah’s Story-A son with VACTREL Association
Inside the Children's Hospital
Release Date: 11/15/2023
ADNP Syndrome: A Child Life Specialist's Journey to Diagnosis, Advocacy & Hope
Inside the Children's Hospital
When Caitlin noticed that her daughter, Kennedy, wasn't meeting developmental milestones, she trusted her instincts—even when others reassured her that everything was fine. As both a former Child Life Specialist and mom of a child with ADNP syndrome, Caitlin shares her family's journey from early concerns and endless appointments to receiving a diagnosis for a condition so rare that only about 500 cases have been identified worldwide. In this conversation, Caitlin opens up about navigating uncertainty, advocating for her daughter in healthcare settings, finding support through rare disease...
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Growing Up with Chronic Intestinal Pseudo-Obstruction
Inside the Children's Hospital
For many families navigating chronic illness, it's hard to imagine what the future might look like for their child. This week on Inside the Children’s Hospital, Katie Taylor sits down with Vincent Rosche, a patient advocate, fitness enthusiast, and survivor who has spent most of his life navigating complex medical challenges. Diagnosed with chronic intestinal pseudo-obstruction (CIPO) at just 9 months old, Vincent grew up with feeding tubes, central lines, frequent hospitalizations, and even battled thyroid cancer as a teenager. Today, Vincent works as the Community Engagement Coordinator...
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Supporting Children Through Burn Injuries
Inside the Children's Hospital
Has your child been burned? Whether it was hot water, ramen noodles, a stove, fireworks, or another accident, this episode guides parents through what to do next. In this episode, Katie sits down with Christella Almonacy, Certified Child Life Specialist at Wellstar's Burn Program, to discuss what families can expect after a child experiences a burn injury. Together, they explore the physical and emotional recovery process, how Child Life Specialists help children cope with painful procedures, and why giving kids choices can make all the difference. Christella also shares common causes of...
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What a NICU Nurse Wants Parents to Know
Inside the Children's Hospital
What is it really like to have a baby in the NICU? Katie Taylor sits down with NICU nurse, educator, and content creator Alyssa Saldivar to discuss how families can find confidence, connection, and support during one of the most challenging experiences of parenthood. Alyssa shares her journey of becoming a nurse during the COVID-19 pandemic, her passion for supporting both families and fellow nurses, and the practical ways parents can become active participants in their baby's care. Together, Katie and Alyssa explore everything from skin-to-skin care and developmental support to...
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Recognizing Infantile Spasms: Navigating a Diagnosis as a Nurse Practitioner
Inside the Children's Hospital
What happens when a pediatric nurse practitioner suddenly finds herself on the other side of diagnosis? On this week's episode of Inside the Children's Hospital, Katie Taylor sits down with Laura Forcella, a developmental pediatric nurse practitioner and mom to a son with Dup15q syndrome and epilepsy. Laura shares the deeply personal journey of recognizing her son's infantile spasms, navigating a rare disease diagnosis, and balancing life as both a medical professional and a caregiver. Laura opens up about the unique challenges of being a "med mom," the emotional shift from provider to parent,...
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What Happens When Your Child Needs an Ambulance, Helicopter, or Medical Transport?
Inside the Children's Hospital
When a child needs emergency transport to a children’s hospital, families are often facing one of the hardest moments of their lives. Behind every ambulance ride, helicopter flight, or plane transfer is a highly trained team working together to keep children safe, while also supporting parents through the unknown. In this episode of Inside the Children’s Hospital, Katie Taylor sits down with Kami Stone, Assistant Clinical Director at Texas Children’s Hospital Austin, and Jacob, a transport EMT with the Texas Children’s Kangaroo Crew, to talk about what pediatric transport really looks...
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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...
info_outlineIn this episode, you will be able to:
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Discover the untold journey of NICU parents, gaining insights and understanding into their unique experiences.
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Uncover the challenges of medically complex pregnancies, and learn strategies for navigating this complex journey with support and resilience.
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Explore the support systems available for medical motherhood, and find out how to build a network of understanding and empowerment.
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Gain invaluable insights and practical tips for navigating the complexities of special needs parenting, empowering you to advocate for your child's unique needs.
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Learn the art of accepting uncertainty in medical diagnoses, finding peace and strength in the face of the unknown.
Hannah Parsons is the guest on this week's episode of Child Life On Call. She shares her personal journey as a mother to a child with Vactrel Association. Hannah has a diverse background, starting out as an actor and comedian before transitioning into editing and stagecraft. Living in Los Angeles with her husband and two-year-old son, Obie, Hannah has faced numerous challenges and complexities throughout her son's medical journey. From navigating a unique pregnancy without insurance to experiencing the unexpected during childbirth, Hannah's story sheds light on the emotional rollercoaster of motherhood and medical motherhood. Her determination, resilience, and unwavering belief in her son's well-being are truly inspiring. Tune in to hear Hannah's incredible journey and gain insights into the realities of special needs parenting.
The key moments in this episode are:
00:00:00 - Introduction
00:02:05 - Pregnancy and Diagnosis
00:06:14 - Birth and Initial Diagnosis
00:10:24 - Navigating the NICU
00:13:48 - Transitioning to Home
00:17:45 - Challenging Medical Conditions
00:19:20 - Unwanted Medical Procedure
00:23:37 - Feeling Unsafe and Disappointed
00:25:02 - Acts of Kindness and Support
00:26:33 - The Impact of NICU Nurses
00:34:54 - Gratitude for a Healthy Child
00:35:45 - Need for Resources and Support
00:36:50 - Navigating Post-Hospital Care
00:37:59 - Importance of Resources and Podcasts
00:45:12 - Diagnosis and Acceptance
Connect with Hannah here.
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