Child Life On Call |  Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support

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


Listen Later

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 healthcare professionals to provide information in ways that are both sensitive and supportive. 

This conversation shines a light on the crucial role of empathy and effective communication in pediatric healthcare. Taylor also acts as a powerful reminder of the resilience of families navigating complex medical conditions.

"There's power in sharing stories, and that power multiplies when you can listen to other parents who have walked a similar path to yours."

What you can learn from this episode:

Communication is Key: Healthcare providers must deliver information compassionately to support families effectively during challenging times.

Parent Advocacy: Taylor's story highlights the importance of parental advocacy in navigating the complexities of a child's medical condition.

Importance of Support Networks: Connecting with other parents and finding community support can be crucial for managing the emotional toll of a child’s diagnosis.

Learning through Experience: Families often develop a deep understanding of their child’s condition, which can empower them to advocate effectively within the healthcare system.

Resilience and Hope: Despite the challenges, there is a powerful narrative of resilience and hope that can inspire other families in similar situations.

Resources and Tips:

CHARGE Syndrome Foundation: Provides invaluable resources for families and professionals 

CHARGE Syndrome Foundation Support Group on Facebook

Whether you're a parent, healthcare professional, or simply interested in learning more about child life, this podcast is for you.

Learn 6 Positions to Help Kids Feel Comfortable and Safe during Medical Procedures

Here are some of our favorite affiliates that help promote positive coping for kids:

10% off Coping Kits and other select merchandise at Present Over Perfect

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.

Instagram.com/childlifeoncall

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

 

...more
View all episodesView all episodes
Download on the App Store

Child Life On Call |  Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & SupportBy Katie Taylor, CCLS

  • 4.9
  • 4.9
  • 4.9
  • 4.9
  • 4.9

4.9

140 ratings


More shows like Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support

View all
The Ben and Ashley I Almost Famous Podcast by iHeartPodcasts

The Ben and Ashley I Almost Famous Podcast

14,139 Listeners

The Nothing Is Wasted Podcast by That Sounds Fun Network

The Nothing Is Wasted Podcast

1,055 Listeners

Scrubbing In with Becca Tilley & Tanya Rad by iHeartPodcasts

Scrubbing In with Becca Tilley & Tanya Rad

8,865 Listeners

The Viall Files by Nick Viall

The Viall Files

25,483 Listeners

Couple Things with Shawn and Andrew by Shawn Johnson + Andrew East

Couple Things with Shawn and Andrew

39,794 Listeners

SmartLess by Jason Bateman, Sean Hayes, Will Arnett

SmartLess

57,712 Listeners

Good Inside with Dr. Becky by Dr. Becky Kennedy

Good Inside with Dr. Becky

4,348 Listeners

We Can Do Hard Things by Glennon Doyle and Audacy

We Can Do Hard Things

41,346 Listeners

Child Life Wild Life by Jessica Lewin, CCLS

Child Life Wild Life

58 Listeners

Moms Talk Autism Podcast by Shannon Korza, Brittney Crabtree, Tash Dillmon, and Jean Mayer

Moms Talk Autism Podcast

355 Listeners

MedCrimes: a Medical True Crime Podcast by Kate Macy and Devon Rebecca

MedCrimes: a Medical True Crime Podcast

383 Listeners

ZOE Science & Nutrition by ZOE

ZOE Science & Nutrition

1,964 Listeners

All There Is with Anderson Cooper by CNN

All There Is with Anderson Cooper

9,585 Listeners

Sold a Story by APM Reports

Sold a Story

7,347 Listeners

Not Gonna Lie with Kylie Kelce by Wave Originals

Not Gonna Lie with Kylie Kelce

9,682 Listeners