LEXINGTON, Ky. (Sept. 16, 2022) — Every six months, Faye DeMastes undergoes a routine echocardiogram. Her heart is strong, says mom Jenna. Faye loves gymnastics, running, swimming and climbing. At 5 years old, Faye has already seen the inside of a hospital more than most people will in their lives.
Faye was diagnosed with VACTERL association, a series of birth defects that affects many of the body's systems. She had four out of the seven possible defects; esophageal atresia, where the upper esophagus ends and does not connect with the lower esophagus, trachea-esophogeal fistula, or an abnormal connection between the trachea and the esophagus, a sacral dimple and a possible abnormality that affects her vertebrae, and a cardiac condition called Tetralogy of Fallot, a rare condition caused by a combination of four defects in the heart.
At 6 months old, Faye underwent open heart surgery. Fast forwarding to 2022, one would have no idea of her complex and harrowing medical past.
“She’s a very outgoing, active, competitive kid,” said Faye’s mother, Jenna. “She has no restrictions on her activities and loves to try to new things. She played soccer this past spring and loved it.”
Faye is just one of more than 1,000 patients treated by the Joint Pediatric and Congenital Heart Program, a collaboration between Kentucky Children’s Hospital (KCH) and Cincinnati Children’s Hospital Medical Center. Established in 2017, the joint program brings together the expertise of Kentucky’s top hospital and one of the country’s best children’s hospitals to create one of the top pediatric heart programs in the country as ranked by U.S. News & World Report.
“With our partners at Cincinnati Children’s, we’re able to offer the best care to our most medically complex patients close to home,” said Carl L. Backer, M.D., program director and chief of pediatric cardiothoracic surgery at KCH. “Some of our patients live in remote areas, and we’re uniquely positioned to relieve families of the stress and burden of traveling across the state for treatment.”
Over the past five years, the program has grown exponentially. Instead of traveling to Lexington or Cincinnati for routine care, patients can go to one of the 17 outreach clinics that’s closest and most convenient to them.
The program has also recruited some of the top pediatric specialists in the country to expand services.
“We added a second pediatric cardiac interventionalist, an advanced cardiac imaging cardiologist, as well as recruited additional cardiac anesthesiologists for patients needing subspecialized anesthesia services,” said Morgan Dezarn, director of the joint program at KCH. “Additionally, our fetal cardiology program had a milestone year in 2022, performing over 500 fetal echocardiograms. In a short time, we’ve become a nationally ranked program, filled with outstanding talent and top-notch outcomes.”
“The Joint Pediatric and Congenital Heart Program has been more successful than anyone could have imagined,” said Andrew Redington, M.D., executive co-director of the Heart Institute and chief of pediatric cardiology at Cincinnati Children’s. “As the only nationally ranked children’s heart program in Kentucky, our joint program is providing outstanding care to more of Kentucky’s children every year. I believe our one program, two-site collaboration is truly the model for the future, so that the best care is delivered to the maximum number of children, as close to home as possible.”
One of those top-notch outcomes is Faye DeMastes. In June, she ran her first race at the Wild Hearts Superhero Run with the other congenital heart defect (CHD) survivors.
“She was so excited to participate in the race with the CHD kids,” said Jenna. “She surprises us every day with everything she does. We are so proud of her and how far she has come.”
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