218: How NOT to Give Families Medical Information - A son with CHARGE syndrome, Taylor's Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
English - May 15, 2024 06:00 - 42 minutes - 39.2 MB - ★★★★★ - 78 ratingsParenting Kids & Family Health & Fitness Medicine child doctor medical nurse parents resident cancer childlife childlifespecialist condition Homepage Download Apple Podcasts Google Podcasts Overcast Castro Pocket Casts RSS feed
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.
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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.