Episode 50 | Eileen's Story - A son with Recessive Dystrophic Epidermolysis Bullosa
Release Date: 11/11/2020
Helping Kids Cope With Needles: The Science Behind Buzzy
Inside the Children's Hospital | Parent Stories, Pediatric Healthcare & What Families Want You to Know
In this episode of Inside the Children's Hospital Podcast, Katie Taylor sits down with Dr. Amy Baxter, pediatric emergency physician, researcher, inventor of , and founder of , to explore how childhood experiences with needles can shape a lifetime of healthcare interactions—and what parents and healthcare professionals can do to help. After watching her own son develop a fear of needles despite her expertise in pediatric pain management, Dr. Baxter began researching why children experience pain differently and how simple, evidence-based strategies can reduce pain during vaccines, blood...
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When You Become Your Child’s Advocate Overnight
Inside the Children's Hospital | Parent Stories, Pediatric Healthcare & What Families Want You to Know
What happens when the child you've dreamed of suddenly receives a diagnosis you've never even heard of? For Deborah, it was Angelman syndrome. In this episode of Inside the Children's Hospital Podcast, Katie Taylor sits down with Deborah Trejo, Art Therapist, to share the powerful story of her daughter Maya's journey to an Angelman syndrome diagnosis. After months of feeding difficulties, developmental delays, seizures, and countless unanswered questions, Deborah and her family finally received a diagnosis just one day after Maya's first birthday. Deborah opens up about the emotional realities...
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Doctor Visits, Diagnoses, and Difficult Conversations: A Parent's Guide to Knowing What to Say
Inside the Children's Hospital | Parent Stories, Pediatric Healthcare & What Families Want You to Know
What do you do when your child receives a diagnosis and your mind suddenly goes blank? Whether you're hearing difficult news for the first time or preparing your child for a medical procedure, knowing what to ask—and how to support your child—can feel overwhelming. In this episode of Inside the Children's Hospital, Katie Taylor, Certified Child Life Specialist, is joined by Dr. Mona Amin, board-certified pediatrician, founder of and Chief Medical Officer at , for an honest conversation about helping families navigate some of the hardest moments in healthcare. Together, they share...
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Prader-Willi Syndrome: Why Caregiving Moms Need Community and Support
Inside the Children's Hospital | Parent Stories, Pediatric Healthcare & What Families Want You to Know
When your child receives a diagnosis, everything changes. In this heartfelt episode, Katie Taylor welcomes back Jessica Patay, founder of to discuss the emotional realities of caregiving, raising a son with Prader-Willi syndrome and autism, and why supporting the mental health of caregiving moms is essential. Jessica shares how a mentor mom transformed her own journey after her son's diagnosis and how that experience inspired her to create We Are Brave Together, a thriving community supporting thousands of caregiving mothers worldwide. She also introduces her newest book, a collection of...
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How Child Life Specialists Help Children Thrive During Hospital Stays
Inside the Children's Hospital | Parent Stories, Pediatric Healthcare & What Families Want You to Know
What does it take to help children thrive during a hospital stay? In this episode of Inside the Children's Hospital Podcast, Katie Taylor sits down with Alyssa Sachs, CCLS, an inpatient Child Life Specialist at , to explore how Child Life Specialists help children and families experience joy, connection, and normalcy—even during long and complex hospital stays. Alyssa shares what it's like supporting children on the inpatient neuroscience floor, where patients range from newborns to young adults with epilepsy, neuro-oncology diagnoses, neurosurgical needs, and more. She offers an inside look...
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ADNP Syndrome: A Child Life Specialist's Journey to Diagnosis, Advocacy & Hope
Inside the Children's Hospital | Parent Stories, Pediatric Healthcare & What Families Want You to Know
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 | Parent Stories, Pediatric Healthcare & What Families Want You to Know
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 | Parent Stories, Pediatric Healthcare & What Families Want You to Know
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 | Parent Stories, Pediatric Healthcare & What Families Want You to Know
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 | Parent Stories, Pediatric Healthcare & What Families Want You to Know
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,...
info_outlineIn this episode, Annie, Certified Child Life Specialist, talks to Eilieen. She is the amazing mom of a determined, fun loving, 4-year-old hero named Brady. Brady was diagnosed with Recessive Dystrophic Epidermolysis Bullosa (RDEB).
While he inspires all who meets him, his favorite thing is just being a typical boy and being treated as such. After a move from Texas to Colorado to find the best care and environment for him, life shifted and their family became advocates in the RDEB community.
Eileen is on the board of the EB Research Partnership and they have an absolutely star studded (like for real a ton of A-listers) event coming up on November 18th that will be streamed on Amazon.
Follow along with Eileen and Brody on Instagram and Facebook.
Find more resources, parent stories and support on www.childlifepodcast.com.