On the surface, Tanecia Fisher is a sassy and spunky munchkin. Like other 5-year-old girls, Tanecia can be found pedaling her red tricycle, being mesmerized by “Frozen,” and blending shades of Play-Doh®. However, for first-time visitors to Tanecia at UF Health’s Pediatric Cardiac Intensive Care Unit, or PCICU, it may take guests by surprise that she has tiptoed near to death more than once.
On March 2, 2012, Courtney and Justin Fisher of Land O’ Lakes, Florida welcomed their second daughter, Tanecia. Her seemingly normal 48 hours after birth came to a halt when doctors discovered an abnormality with Tanecia’s heart. After further examination, physicians diagnosed Tanecia with hypoplastic left heart syndrome, a complex congenital heart defect where only three heart chambers are fully functional instead of four. In addition, Tanecia endured cognitive delays due to epilepsy as well as limb length discrepancy, a condition in which one side of the body grows faster than the other side.
As Tanecia’s condition continued to deteriorate over a five-year period into congestive heart failure, physicians recommended that her parents meet with the team at the UF Health Pediatric Heart and Lung Transplant Program in Gainesville. Justin and Courtney met with F. Jay Fricker, M.D., a pediatric cardiologist at the UF Health Congenital Heart Center, and a member of the UF Health Pediatric Heart and Lung Transplant team, to discuss a transplant as Tanecia’s only viable option.
Before 1980, this diagnosis was a death sentence for many patients, explained Joseph Philip, MBBS, M.D., FAAP, a pediatric cardiac intensivist and interim director for the PCICU at UF Health. As medical research evolved, pediatric cardiologists investigated possible short-term and long-term solutions for patients born with this condition. As a result, patients with Tanecia’s rare condition undergo three separate palliative surgical procedures in their lifetime, as steps toward heart transplantation.
At UF Health, Philip’s job is to keep Tanecia well-conditioned to receive a heart. While some patients awaiting organ transplant may wait only a couple of days, others stay in the hospital for over a year. For families like the Fishers, UF Health becomes home away from home with Courtney always by Tanecia’s side and Justin in Land O’Lakes with Tanecia’s siblings.
To Philip, a patient’s attitude can make all the difference in how they continue to persevere and stay positive.
“The fact that she wants to play basketball and ride a bike keeps us going,” Philip said.
Nine heart surgeries later, Tanecia patiently awaits at UF Health Shands Children’s Hospital for her heart to arrive.
Learn more about Tanecia’s journey in a recent news story by WJXT-TV Channel 4.