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

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

Podcast Show Notes

“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 system, and the critical role of child life specialists in providing support. Lyndsey’s story is one of immense courage, the power of hope, and the transformative impact of compassionate care on families navigating pediatric health challenges.

“Having a medically complex child is like everything’s fine until it’s not.” – Lyndsey

 

Key Insights:

  • The Crucial Role of Early Diagnosis: Lyndsey’s experience underscores the importance of prenatal screenings and the challenges of facing unexpected medical conditions before birth.
  • Support Systems Are Key: The journey highlights how family, medical teams, and child life specialists form a crucial support network that helps navigate the complexities of a child’s medical care.
  • Resilience in the Face of Uncertainty: The family’s story is a testament to the resilience required to face the unknown and advocate for a child’s health and well-being.
  • The Importance of Child Life Specialists: Lyndsey’s story reinforces how child life specialists play a vital role in supporting both the child and the family through medical procedures, hospitalizations, and the overall healthcare journey.

How Child Life Specialists Can Help:

  • Understanding Post-Urethral Valves: Providing educational materials to help parents understand complex medical conditions.
  • Building a Support Network: Encouraging families to connect with others through support groups and communities.
  • Coping Strategies: Sharing resources and strategies for families to manage stress and maintain emotional well-being.

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

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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.

Instagram.com/childlifeoncall

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

Episode 15 | Lyndsey’s story – A daughter with hearing loss and bilateral cochlear implants

Episode 149 | Recap of 2022 with Lyndsey + Katie

 

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Being close to a trusted adult is powerful. It lessens pain and brings comfort when kids need it most. This guide shows you how to keep kids safe, and help them feel supported, during medical procedures. From the Meg Foundation for Pain and Child Life On Call.

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