Lifelong Jacksonville resident Heather Denney has seen her share of doctors, nurses and the inside of hospitals during her 25 years as first a child and then an adult with congenital heart disease (CHD). But what makes her story special is that her experience with their compassionate care and dedication not only got her through the darkest and scariest times of her life, but inspired her to do the same for others by becoming an associate care provider at Wolfson Children’s Hospital.
“I always felt like Wolfson Children’s Hospital was my second home when I was little,” said Heather. “They were all so friendly and nice. My mother was a nurse in the Pediatric Intensive Care Unit at Wolfson Children’s Hospital, so when I finished high school, I thought it would be a great fit for me to work with pediatric patients.”
Working with some of the same doctors and nurses who used to take care of her was not only a privilege, she says, but being at Wolfson also was a way for her to give back to the place that’s meant so much to her. As an associate care provider, Heather works with patients taking vitals, helping with baths, and taking children to and from tests and appointments. She also helps distract them during medical procedures – something she knows all too well is key in helping children feel more calm in a world of testing machines and needles.
When Heather was born, doctors immediately detected a problem with her heart. Diagnosed with a congenital heart condition called pulmonary atresia, her heart was missing a vital connection between where her heart pumped blood to her lungs. The pulmonary valve, located on the right side of the heart between the right ventricle and the pulmonary artery, had not formed properly and was obstructing the blood flow to the lungs where blood becomes oxygenated.
Because Heather was too tiny for a complete repair, her first surgical procedure was performed at several days of life to reroute blood from her arm to the lungs allowing for a source of blood to get oxygen. At age three months, she was then able to have a surgical repair creating the expected connection between the right ventricle of her heart and the arteries to the lungs. Overall, she underwent seven surgeries or procedures as she has grown including placement of a stent to widen the artery to her lungs. Most recently, she underwent surgery in 2000 to have a pig valve implanted to replace her previously surgical-placed, and age-related, damaged valve. Since then, she says she’s led a fairly normal life.
“I have energy now, I feel like a normal person and I do pretty much what I want to do, but I know when to stop,” says Heather.
“She’s got a great quality of life,” says Brandon Kuebler, MD, a pediatric cardiologist and adult congenital heart specialist with the UF Health Pediatric Cardiovascular Center and with Wolfson Children’s Hospital. “I expect that down the road she may experience issues like an increase in abnormal heart beats caused from scar tissue, and there’s also a likelihood of the replaced valves ultimately failing so she will need to have future procedures. But right now she will tell you she feels good, and has few limitations.”
In the meantime, Heather does not plan on slowing down, doing her best to emulate those who cared for her over the many years she was – and continues to be – a patient in the Adult Congenital Heart Program, a collaboration between Wolfson Children’s Hospital, the UF Health Pediatric Cardiovascular Center, and the Congenital Heart Center at UF Health in Gainesville. Because of the special intricacies and varying anatomical combinations pediatric cardiologists and pediatric cardiovascular surgeons are used to working with individuals with congenital heart defects, they are well equipped to handle any procedure that an adult with congenital heart disease coming in for a follow-up surgery might need.
“In the past, many children with congenital heart disease didn’t survive to adulthood and when they did, there wasn’t a transition into adulthood to manage their lifelong heart condition. Many adults living with CHD have older procedures that may need to be repaired or they may need a whole new procedure that is more effective as treatments have advanced,” says Dr. Kuebler. “Pediatric heart specialists like those in our Adult Congenital Heart Program are best-trained and skilled to work with adults with congenital heart disease because we specialize in these conditions and can provide the latest diagnostic and treatment options. We collaborate with adult cardiologists because even adults with congenital heart disease may also have acquired heart disease due to lifestyle or aging.”
These adult congenital heart specialists who “are essentially a hybrid physician” are trained to understand pediatric congenital heart issues combined with knowledge about the adult patient and associated age-related medical issues. This unique medical specialty is skilled to follow patients as they age, providing a progression of care that ultimately helps more patients.
“We have a culture of caring and compassion that the physicians and staff show for children with congenital heart disease,” Dr. Kuebler explains. “What is more remarkable is that these individuals who have a passion for providing caring to children, are willing to expand their care to adults who have congenital heart disease so that their experience can be applied to a larger range of people.”
As a patient, Heather says, the continuity of care is comforting because her Adult Congenital Heart Program care team understands what she’s been through, and what her specific needs are as an adult. Because she’s had experience being a child patient, she knows how reassuring it is to have this special group of people watching over her – and she hopes to provide similar comfort to the children in her care.
“I love it here at Wolfson Children’s Hospital,” says Heather. “I’ve been here five years, and I never want to leave.”