Episode 197 | James' Story- A son with a congenital heart defect
Release Date: 11/29/2023
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216: How to talk with Kids about Child Abuse - Jane's Story [Repost]
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
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, Jane Donovan, to delve into the sensitive and vital topic of child protection within the...
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215: Ruptured Appendix: Emergent Surgery, 6 Days in the Hospital & Struggles to Discharge - Aspen's Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
"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 story not only highlights the challenges and nuances of navigating pediatric healthcare,...
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214: Sacrifice, Advocacy, Joy: Raising a Son with End Stage Kidney Disease - The Ransome Family's Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
"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 website, your go-to online resource for valuable information and support. In this episode, Katie Taylor welcomes the Ransome family, known to many as the , where they share their daily life and the challenges of managing their son Sully's end-stage kidney disease. From their initial...
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213: Parents, CCLS, Students: Show Up Exactly As You Are
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
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 parental perspectives will return in future episodes. Message of Empowerment: The core message is about...
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212: CCLS Story: 18 Years of Supporting Kidney Families -Julie's Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
"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 Children's Hospital in Houston, Texas. Julie shares her profound journey of supporting children with...
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211: A Son Born with End-Stage Kidney Disease (Part 1): Lyndsey's Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
"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 narrative, we learn about the rollercoaster of emotions, the challenges of navigating the healthcare...
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210: Connection, Healing, and Love: Insights from Patrice Karst, Author of The Invisible String
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
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209: Research on Parent Caregivers of Children with Medical Complexities - Elise's Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
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208: Military Life, Pediatric Complex Care Abroad & Resiliency: Kat's Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
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 their family's journey, offering invaluable insights into the realities faced by military families...
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Healing Without Surgery: Umbilical Hernia Solutions from a Physical Therapist
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
What if we could prevent more kids from having to have invasive surgery? During this episode, we are joined by Katie Corrado, who invented a product that works as an alternative to surgery for babies and children. Tune in to hear how her first-hand experience of watching her child struggle with an umbilical hernia led her to an innovative solution that she now offers to other families facing the same challenge. You’ll also learn why Katie is an advocate for proactive rather than reactive medical solutions and how her passion for connecting with kids led her to work as a Physical Therapist...
info_outlineIn 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 his wife have three children, one of whom was born with a serious congenital heart defect. They navigated their way through multiple surgeries and hospital stays, learning valuable lessons along the way. James's story highlights the importance of holistic care and the impact of medical professionals, from doctors to Child Life Specialists, in providing support to families. James and his family found strength and created meaningful experiences for their child.
It was a privilege to be his father. We learned a lot through our journey about what it means to live when you have a medical condition. - James Robinson
In this episode, you will be able to:
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Discover the transformative power of parenthood and how it can bring joy and strength in the face of medical challenges.
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Explore the importance of transparency in navigating the realities of your child's medical condition, and how open communication can benefit both you and your child.
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Learn how child life specialists in hospitals can provide support and create meaningful experiences for your child during their medical journey.
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Find inspiration in stories of resilience and the power of support from other parents who have faced difficult times with their children's medical conditions.
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Discover practical strategies for balancing fear and living a fulfilling life, while still prioritizing your child's health and well-being.
Connect with James
Learn more about James' book here.
Link to purchase "More than we Expected"
The key moments in this episode are:
00:00:00 - Introduction
00:00:40 - Purpose of the Podcast
00:02:07 - Story of James' Son
00:05:15 - Balancing Fatherhood and Medical Care
00:07:01 - Trip to Australia and Medical Emergency
00:09:18 - Differences in Medical Practices
00:10:04 - Heart Beads
00:13:11 - The Miracle of the Body Formation
00:14:00 - Trusting the Body's Processes
00:15:47 - Accepting Things Beyond Control
00:16:22 - Challenges of Living in Another Country for Medical Treatment
00:19:26 - The Healing Power of Nature
00:25:34 - The Impact of Therapists
00:26:01 - Exploring the Hospital
00:27:09 - Going Outdoors
00:28:19 - Unexpected Kitchen Visit
00:31:30 - Balancing Fear and Living
00:37:34 - The Purpose of Writing the Book
00:38:01 - The Importance of Child Life
00:38:48 - Parenthood and Self-Discovery
00:40:53 - Availability of the Book
00:42:31 - Conclusion and Resource
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