New Episodes Every Wednesday

Caregiver Stories Episodes

Explore personal accounts from parents and caregivers as they share their journeys through the emotional ups and downs of caring for a hospitalized child.
224
July 10, 2024

224: A son with Burkitt lymphoma at 8 year's old - Reina's Story

"My immediate thought was I'm going to lose my son. That was where my head went immediately." - Reina Introduction In this episode of Child Life On Call, Katie Taylor talks with Reina, a devoted mother from Nashville, Tennessee. Reina shares her heartfelt journey of caring for her son Elliott, diagnosed with Burkitt lymphoma at eight years old. She discusses the emotional and practical challenges faced during Elliott's treatment, the importance of advocating for her child's needs, and the suppo...
222
June 26, 2024

222: A son born at 25 weeks after loss, NICU NP mom and podcaster: Ashley O'Neil

In this episode host Katie Taylor sits down with Ashley O'Neil, a family nurse practitioner and a NICU mom. Ashley shares her journey when her son, Colin, was born at 25 weeks gestation and the following 183 day NICU stay. Listen to hear how she balanced work, advocating for her son's needs, coping with personal loss, as well as providing invaluable support and resources to other families in similar situations. "The hardest part isn't being in the NICU; it's the real advocating that starts afte...
219
May 22, 2024

219: 60 Years Later: Reflecting on a Daughter with Ichthyosis

"We, we weren't letting those people push us around because, believe it or not, living with us 24 hours a day, we knew more than some of the doctors." - Skip Vilas In this heartfelt episode of the Child Life On Call podcast, host and CCLS Katie Taylor interviews Deb Vilas, an expert child life specialist, alongside her parents, Skip and Joyce Vilas. They share their story spanning over 60 years, recounting the challenges and triumphs of raising Deb, who was born with ichthyosis, a rare skin con...
218
May 15, 2024

218: How NOT to Give Families Medical Information - A son with CHARGE syndrome, Taylor's Story

Today's guest is Taylor Happley, a mom of a child with CHARGE syndrome. "We need to figure out why and how to help these kids get the medical attention that they need." In today's episode, Katie Taylor had an important conversation with Taylor Happley, whose son has CHARGE syndrome. Taylor's prenatal journey was filled with miscommunication and emotional challenges. Taylor's story of learning about her son's diagnosis of CHARGE Syndrome in less-than-ideal circumstances underscores the need for ...
217
May 8, 2024

217: Navigating IEPs, Infantile Spasms, NICU & STXBP1 - Erin's Story

Today's guest is Erin Prosser, an IEP expert consultant and a mom of a daughter diagnosed with STXBP1. "You don't see it coming. Being a rare disease parent hits you like a ton of bricks." In today's episode Katie Taylor had the chance to speak with Erin Prosser, an IEP expert consultant and a mom navigating the complex world of pediatric healthcare due to her daughter Lucy's rare neurodevelopmental disorder. Erin shares her profound journey from a second-time, confident mom to a whole new role...
216
April 24, 2024

216: How to talk with Kids about Child Abuse - Jane's Story [Repost]

April is Child Abuse Prevention Awareness Month. We have reposted this episode to bring awareness and give you tangible tools to speak with your kids about child abuse. Today's guest expert is Jane Donovan, who is a child abuse prevention advocate. "And like we say in child life, you have to prepare. So you know what to expect and you know how to cope with what's going to happen next." - Katie Taylor, CLOC In this crucial episode, Katie Taylor is joined by a child abuse prevention advocate, Jan...
215
April 17, 2024

215: Ruptured Appendix: Emergent Surgery, 6 Days in the Hospital & Struggles to Discharge - Aspen's Story

"I've learned so much in this whole process. It's like you have a depth inside of you that resurrects as an advocate and high alert, and it lives inside of you when you need it." -Aspen, Willa's Mom In this episode of Child Life On Call, host Katie Taylor and guest Aspen share an intense and educational journey through pediatric appendicitis. Aspen recounts her daughter Willa's sudden illness, misdiagnosis, and the emotional rollercoaster of a ruptured appendix leading to urgent surgery. This ...
214
April 10, 2024

214: Sacrifice, Advocacy, Joy: Raising a Son with End Stage Kidney Disease - The Ransome Family's Story

"Sometimes it's really therapeutic though to remember all that you have gone through because I feel like there are times when we look at each other and I'm like how did we get here?" -Tayler Ransome We're grateful for our sponsor for this episode, Nestle Health Science, and are thrilled to share their incredible MyTubeFeeding.com/ChildLifeOnCall website, your go-to online resource for valuable information and support. In this episode, Katie Taylor welcomes the Ransome family, known to many as t...
213
April 3, 2024

213: Parents, CCLS, Students: Show Up Exactly As You Are

In This Episode: Katie Taylor goes off the beaten path in this special episode to share a profound moment of inspiration that struck her. This episode is a heartfelt message to child life specialists, students, and parents, emphasizing the importance of showing up as you are, without the burden of imposter syndrome. Key Highlights: A Different Kind of Episode: Katie shares her spontaneous thoughts that came from a moment of inspiration, promising that the usual stories from the field and pare...
212
March 27, 2024

212: CCLS Story: 18 Years of Supporting Kidney Families -Julie's Story

"As a child life specialist, watching my tiniest patients grow and accomplish so many things is my favorite part of the job." - Julie, Certified Child Life Specialist Episode Summary: In this heartfelt episode of Child Life On Call, we celebrate Child Life Month by diving deep into the dedicated world of child life specialists and the resilient families they support. Host Katie Taylor talks to Julie, a remarkable child life specialist with 18 years of experience in the renal service at Texas Ch...
211
March 20, 2024

211: A Son Born with End-Stage Kidney Disease (Part 1): Lyndsey's Story

"Having a medically complex child, it's like everything's fine. And then, you know, we have a morning where we've thrown up a lot or our blood pressure is too low, and it just doesn't look good. You just never know what you're going to get." - Lyndsey, Episode 211 In this deeply moving episode, we are joined by Lyndsey, who shares the compelling journey of her son James's battle with post-urethral valves before birth, leading to kidney issues and eventually a kidney transplant. Through her narr...
210
March 13, 2024

210: Connection, Healing, and Love: Insights from Patrice Karst, Author of The Invisible String

"Love is the most powerful force in the universe, and the invisible string is a testament to the connections that bind us all." - Patrice Karst In this special Child Life Month episode, Katie Taylor sits down with Patrice Karst, the beloved author of "The Invisible String" and several other impactful books. They explore Patrice's journey from personal challenges to becoming a source of comfort and connection for families worldwide. This conversation delves into the power of storytelling in addr...
208
Feb. 28, 2024

208: Military Life, Pediatric Complex Care Abroad & Resiliency: Kat's Story

In this profound episode, we join Katie Taylor as she delves into the inspiring journey of a military family navigating pediatric healthcare for their two medically complex children. Through the voice of the remarkable mother, Kat, we explore the unique challenges and triumphs of securing continuous, specialized care amidst the frequent relocations and complexities inherent to military life. Kat shares her experiences with advocacy, the importance of resilience, and the deep bonds forged through...
Feb. 7, 2024

205: How to Support Kids who are Grieving, Bittersweet Relationships & Personal Loss

In this episode, we're honored to have Jessica Correnti, a certified child life specialist and a bereaved mother, share her profound insights on grief. Jessica's dual perspective offers a rich understanding of the multifaceted nature of grief beyond the loss of a loved one. She discusses her personal journey, the importance of recognizing and naming grief in children, and how this awareness can empower kids to navigate their emotions. Key Highlights: Jessica's background as a child life specia...
204
Jan. 31, 2024

204: Caregiver Isolation, Transitioning to Adult Special Needs, and Becoming CapeAble - Marna's Story

"Millie's journey has taken me to the end of myself, but it's been the most beautiful beginning of understanding humanness and how to be compassionate and how to really be kind to other people and take notice that the story that is their life may not be what you see." How does trauma affect the whole family, and how can we show compassion to adults with special needs? One thing I have learned about throughout my career as a child life specialist and have heard from many families on this podcast...
201
Jan. 10, 2024

201: Personal Growth Theory, NEC in the NICU and Shielding Siblings - Kathryn's Story

I'm his mom, and I carried him for almost nine months, and no one loved him more than me. I'm his expert, and I'm going to own that. - Kathryn Whitaker Have you ever found yourself amazed at the strength people find in the toughest of times? Well, on today's podcast, we're talking about one of the common themes we've seen over the past 200 episodes of Child Life On Call and something I consistently see parents share on social media. We're talking about the incredible phenomenon of PTG, or post...
200
Dec. 20, 2023

200: Anonymous questions from Instagram, Katie's personal burn story, and reflecting on 2023

In this milestone 200th episode, Katie delves into a unique mix of content, answering insightful questions from Instagram, sharing a personal story about her daughter Cameron's burn accident, and reflecting on the impactful moments of 2023. The episode features discussions on a variety of books Katie read throughout the year, the best toys of 2023, and tackles the challenging aspects of balancing work and personal life as a child life specialist. Katie's candid sharing of Cameron's experience p...
199
Dec. 13, 2023

Episode 199 | Kate's Story- A daughter with Infantile Spasms

Join me for an emotional and insightful conversation as I sit down with Kate Kostolansky in this episode of Child Life On Call. Kate, a dedicated mother and advocate, shares her touching journey of raising her daughter, Charlotte, who battles infantile spasms. In this heartfelt discussion, Kate sheds light on the challenges faced by families dealing with rare medical conditions, emphasizing the importance of parental instincts and advocating for timely medical attention. Discover Kate's inspirin...
198
Dec. 6, 2023

Episode 198 | Jennifer's Story- A son with necrotizing enterocolitis (NEC)

In this episode of Child Life On Call, we are honored to host Jennifer Canvasser, the driving force behind the NEC Society, as she shares her poignant journey and advocacy for Necrotizing Enterocolitis (NEC) awareness in the NICU. Join us as Jennifer unveils her personal story and how she transformed her loss into a powerful force for supporting families grappling with NEC. Gain valuable insights into the pivotal role of human milk and early intervention in mitigating the risk of NEC, and the vi...
197
Nov. 29, 2023

Episode 197 | James' Story- A son with a congenital heart defect

In this episode, our guest James Robinson will share the keys to living life to its fullest, both inside and outside of the hospital, so that you can provide the result of bringing joy and happiness to your child's life, despite their medical condition. James Robinson, the author of the book "More Than We Expected: 5 Years with A Remarkable Son." On today's episode, he shares his personal experience as a parent of a child with a congenital heart defect. Living in Brooklyn, New York, James and ...
196
Nov. 15, 2023

Episode 196 | Hannah's Story-A son with VACTREL Association

In this episode, you will be able to: Discover the untold journey of NICU parents, gaining insights and understanding into their unique experiences. Uncover the challenges of medically complex pregnancies, and learn strategies for navigating this complex journey with support and resilience. Explore the support systems available for medical motherhood, and find out how to build a network of understanding and empowerment. Gain invaluable insights and practical tips for navigating the complexit...
195
Nov. 8, 2023

Episode 195 | Mackenzie's Story- A daughter with Severe Tethered Cord and Caudal Regression Syndrome

Join Katie Taylor in an emotional conversation with Mackenzie Carolin as they discuss the unexpected medical journey she faced with her daughter. Learn how Mackenzie navigated the complexities of her child's healthcare needs and discover the importance of trust and human connections during challenging times. This episode of Child Life On Call provides valuable insights and support for parents who find themselves in similar situations. Don't miss this heartwarming and inspiring discussion that hi...
194
Nov. 1, 2023

Episode 194 | Keeley's Story- A daughter with hydrops fetalis

Are you a parent of a child with a medical condition? Join me, Katie Taylor, as I chat with Keeley Machen Schares, a Child Life Specialist, in this special episode of Child Life On Call. Keeley takes us through her incredible journey as a mother to a premature baby with hydrops fetalis and profound hearing loss. From routine ultrasounds to a life-saving diagnosis, Keeley's story will captivate you. Learn about the challenges she faced, the importance of finding the right medical team, and the po...
192
Oct. 18, 2023

Episode 192 | [Repost] Teresa's Story- A daughter with Spina Bifida and a Tethered Cord

This episode is a repost in honor of Spina Bifida awareness month. Are you a parent of a child with spina bifida who is seeking support and guidance to navigate the challenges of raising your child? Are you looking for increased understanding, support, and strategies to help you and your child thrive? Join us as we welcome guest Teresa Crespo, who will be sharing the solution to help you achieve that desired outcome. Get ready to gain valuable insights and practical tips that will empower you as...