Bailey Abbott has been a patient at UF Health Shands Children’s Hospital from birth. She was born with a rare chromosomal condition — Turner Syndrome — which occurs when a female child is missing an X chromosome. Turner Syndrome occurs 1 in every 2,000 live female births. Turner Syndrome can cause conditions that include heart and kidney defects, hearing or eyesight problems, short stature, swollen hands and feet, scoliosis, learning disabilities and even infertility.
When Bailey was born, her parents were stunned by the diagnosis, having never heard of Turner Syndrome before, and could only find scant information on the internet. The family was referred to UF Health Shands Children’s Hospital because of the breadth of care available from our Turner Syndrome specialists. Nephrologists also monitor Bailey’s single kidney.
The first intervention for Bailey was a three-week stay in the cardiac area of UF Health’s Neonatal Intensive Care Unit after an operation to correct the narrowing her aorta. She started daily injections of growth hormones when she was 2, and will continue to receive them until puberty.
Bailey visits the UF Health’s Turner Syndrome Clinic every four months, where she is seen by many specialists, including endocrinologists to monitor her growth, cardiologists for an electrocardiogram and other tests and psychologists for education consults and dentists as needed.
Elizabeth Fudge, M.D., Bailey’s pediatric endocrinologist, and Jennifer Co-Vu, M.D., director of the Fetal Cardiac Program, have had a powerful effect on Bailey and her family. Bailey’s parents, Ashley and Chet Abbott, said they were not sure what they would have done without these two physicians.
“In the beginning, it was hard to accept this diagnosis,” Ashley said. “But the more we learned about it and the more peers we met, the easier it got. People quickly learn that Bailey is just an active 7 year-old with a bright, bubbly personality who touches lives everywhere she goes.”
Besides Disney princesses, candy and stuffed animals; Bailey has a wide variety of interests. She loves meeting new friends and learning about their diagnosis. Her favorite memory so far has been the 2016 Dance Marathon weekend, especially interacting with the teams of UF students who were supporting the Dance Marathon events.
Bailey’s family continues to spread awareness of Turner Syndrome by hosting butterfly walks annually nd reaching out to other families affected with Turner Syndrome. The butterfly walk is a national fundraiser by Turner Syndrome Society of the United States that brings communities together to raise awareness for this rare disease.
“We will always be forever grateful to Shands Hospital. Without their care, Bailey might not be with us today,” Ashley said.
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