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Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist

Nov 1, 2023

Are you a parent of a child with a medical condition? Join me, Katie Taylor, as I chat with Keeley Machen Schares, a Child Life Specialist, in this special episode of Child Life On Call. Keeley takes us through her incredible journey as a mother to a premature baby with hydrops fetalis and profound hearing loss. From routine ultrasounds to a life-saving diagnosis, Keeley's story will captivate you. Learn about the challenges she faced, the importance of finding the right medical team, and the power of support from fellow parents. Keeley's experience serves as a beacon of hope and inspiration for parents navigating through their own medical journeys. Don't miss out on this heartfelt conversation and join us today.

In this episode, you will be able to:

  • Discover how a child life specialist can support you and your child through their medical journey, providing invaluable emotional and practical guidance.

  • Understand the complexities of hydrops fetalis and pregnancy complications, and gain valuable insights into managing these challenges during pregnancy.

  • Explore the emotional toll of a lengthy NICU stay and discover strategies to navigate the rollercoaster of emotions that come with it.

  • Learn about the journey of receiving a hearing loss diagnosis for your child and the positive impact cochlear implants can have on their life.

  • Get inspired to become an advocate for your deaf child, empowering them to thrive and ensuring they have access to the resources and support they deserve.

My special guest is Keeley Machen Schares

Keeley Machen Schares is a seasoned Child Life Specialist with over seven years of experience. As a dedicated mom herself, she understands firsthand the challenges and emotions that come with having a child with medical conditions. Keeley's journey took an unexpected turn when her daughter, Dottie, was diagnosed with hydrops fetalis during pregnancy. This life-changing experience led her to navigate the complexities of the healthcare system while also being a supportive advocate for her daughter. Keeley's expertise in child life and her personal experience as a parent of a child with special healthcare needs make her a valuable resource for other parents facing similar situations. She brings a unique perspective and a wealth of knowledge to the discussion, providing insights and support to parents dealing with prematurity, hydrops fetalis, and hearing loss.

The key moments in this episode are:

00:01:08 - Introduction to Keeley

00:03:25 - Finding Out About Dottie's Condition

00:06:55 - The Impact of the 32-Week Ultrasound

00:10:20 - Expressing Gratitude

00:15:32 - The whirlwind of Dottie's birth and NICU stay

00:18:26 - The significance of scent cloths

00:21:13 - Navigating visits and the emptiness of leaving

00:23:50 - Dottie's health progress and gratitude

00:26:13 - Balancing rest and gratitude for visitors

00:31:57 - Additional Testing and Switching Providers

00:34:30 - Cochlear Implants and Hearing Aid Phase

00:39:00 - Advocating for Deaf and Hard of Hearing Kids

00:40:28 - Impact on the Speaker's Life and Perspective


Connect with Keeley here. 

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