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Child Life on Call - Episode 189 | Ryan’s Story- A son with Costello Syndrome

Katie Taylor, CCLS

CEO and Founder, Child Life On Call

Meet Ryan Sheedy, an incredible father who, much to his own surprise, found himself immersed in the delightful chaos of caring for twin boys. His world drastically transformed ten years ago, when he moved from Pennsylvania to Bentonville, Arkansas. Not only has Ryan navigated the unexpected challenges of parenting twins, but he has also bravely navigated his son’s Costello Syndrome diagnosis. Through it all, he’s embraced being a stay-at-home dad, constantly learning, adapting, and conquering unforeseen hurdles.

We can plan as much as we want to plan, but it’s out of our control. We have to go with the flow. – Ryan Sheedy

In this episode, you will be able to:

  • Delve into the heartening and daunting experiences that fathers encounter in the NICU, shedding light on their tenacity and determination.

  • Grasp the profound impact support and open communication can make in navigating the NICU’s challenging landscape.

  • Understand better the diverse responsibilities fathers shoulder as caregivers and staunch advocates in their children’s healthcare journey.

  • Comprehend the rollercoaster ride of emotions and experiences that encapsulate being a stay-at-home dad and the head caregiver.

  • Get introduced to ‘Mejo’, a versatile web app offering an efficient solution to

The importance of communication and support in the NICU cannot be overstated. It anchors not only the medical care of the infant but also the emotional well-being of the parents. Ryan’s story emphasizes how a strong support network, open communication with healthcare professionals, and sharing information with family and friends can make a significant difference in this intense journey.

The resources mentioned in this episode are:.

  • Research and educate yourself on the complexities and nuances of healthcare, especially if you are a parent or caregiver of a child with medical needs.

  • Reflect on your own role in your family’s healthcare journey and consider if you are giving opportunities to support people around you to get involved and help.

  • Connect with other parents and support people in the healthcare community to share stories, advice, and experiences.

  • Explore resources and tools available to help you become a confident advocate and partner with your child’s care team during healthcare experiences.

  • Take time to understand medical terms and concepts related to your child’s condition or treatment to better communicate and make informed decisions.

  • Reach out to local support groups or organizations to connect with other parents going through similar experiences and find additional resources in your community.

  • Consider the emotional toll of being a caregiver and seek out emotionally safe spaces and support systems to help navigate the challenges and complexities of healthcare.

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