Meet Ellie: A Connecticut Children’s Champion
Ellie's parents learned about her Down Syndrome diagnosis during prenatal testing. "Our world shifted," says Evan, Ellie's father. "We went from worrying about having our first baby to worrying about our first baby that also has special needs."
participating in Family Advocacy Day 2023.
After she was born, Ellie spent a month in the NICU at her local children's hospital before her family moved to Connecticut, under the careful supervision of the doctors and nurses. Once her family settled in Connecticut when Ellie was just three years old, she became a patient at Connecticut Children's. "There was so much unknown and without the guidance and support of the specialized care at the children's hospital, we would have been lost," says Evan.
Her care plan also calls for regular follow up appointments and check-ins with all of her providers, including ENT, cardiology, endocrinology, OT, PT and everyone in between. "My children's hospital is important to me because they help me feel better and my daddy works there!" says Ellie.
The socioemotional effects of COVID-19 were tough on Ellie and her family. "Just being around her parents isn't the worst case scenario, but we can only do so much," says Evan. "It isn't the same thing as playing and learning with other children."
Today, Ellie is doing well, but requires many follow-ups and check-ins as she grows. She will eventually need to have heart surgery for her bicuspid valve. Her favorite activity is swimming at the beach and playing with her brother and sister.
Family Advocacy Day
Elevating patient stories and educating lawmakers remains critical to increase awareness about the essential care provided by children's hospitals.