Kayleigh’s Story: On January 1, 2014, Kayleigh was born at Mercy Medical Center weighing just 11.64 ounces. Before being born, Kayleigh had experienced intrauterine growth restriction. This meant the baby didn’t have the space she needed to grow. Therefore, she wasn’t getting enough blood, oxygen or nutrients.
At 26 weeks, her mother, Nicole, experienced preeclampsia and kidney and liver failure. Doctors made the decision to deliver Kayleigh immediately or Nicole’s life would be in danger. Delivered by C-section, Kayleigh entered the world lifeless. It took several attempts to intubate her before she let out her first cry.
Kayleigh spent 10 months in the hospital. When she came home, she was ventilator dependent, on oxygen, had a feeding tube and required 21 medications.
At age one, Kayleigh was enrolled in the Rare and Expensive Case Management (REM) Program. She was assigned to The Coordinating Center. Nicole said she is grateful for The Coordinating Center’s support and guidance. “It helped me be a better mother.”
In 2015, Kayleigh was taken off of the ventilator, at least four years earlier than doctors predicted. Kayleigh and her family continue to work toward health milestones. Every week Kayleigh has speech therapy, occupational therapy, a developmental assessment, physical therapy and feeding classes.
Our Impact: Kayleigh’s Coordinator advocated for additional nursing hours to simplify the family’s schedule. Kayleigh’s Coordinator also helped the family locate transportation resources to allow Kayleigh to attend a day program.
