Discover how Child Life Specialists play a pivotal role in transforming the care experience for children with kidney disease and providing essential support to their families.

“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 end-stage renal disease and their families, emphasizing the incredible growth and accomplishments of her patients, from NICU discharge to life milestones like graduation and beyond. This episode shines a light on the unseen challenges and invisible diseases, offering a beacon of hope and understanding for families navigating similar paths.

Key Insights and Lessons:

• The Power of Specialization: Julie’s dedication to the renal unit for nearly two decades highlights the impact of specialized care and deep knowledge in supporting families through long-term medical journeys.
• Invisible Illness Awareness: Kidney and renal diseases are often “invisible illnesses,” where children may not appear sick externally, challenging families to seek and receive support from their communities.
• Advancements in Treatment: Remarkable advancements in transplant medicine and the introduction of new facilities like a dedicated dialysis unit represent hope and progress in the care of patients with kidney disease.
• Comprehensive Family Support: The role of child life specialists in educating and supporting families beyond medical interventions, helping them navigate school, social challenges, and encouraging participation in community events.
• Celebrating Growth and Achievements: Witnessing the development and achievements of patients, such as learning to walk, talk, and engage with their favorite activities post-transplant, underscores the transformative impact of child life specialists.

“We actually just opened up a brand-new dialysis unit at our hospital…watching that come to fruition from having been a dream of the department for so long to actually happening has been amazing.” – Julie

Resources and Tips:

• Kid’s Health: Offers kid-friendly explanations and illustrations about medical conditions and treatments.
• National Kidney Foundation: Provides extensive resources and information for families dealing with kidney disease.
• Kidney School: An educational platform with modules for healthcare team members and families to learn about kidney disease.

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.

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