In September 1988 when Brooke Tarkington was born, the staff in the delivery room noticed that her blue color wasn’t resolving even though she was breathing normally, and she was whisked away to the NICU for tests. In a time when fetal ultrasounds were not as advanced, no one had a clue that she had a severe heart defect until she came into the world. Fortunately for Brooke, a life-saving technique was available, and at 4 weeks old she underwent the surgery that not only allowed her to survive, but to ultimately fulfill her dream of becoming a mother.
Twenty-six years later on November 7, 2014, Brooke gave birth to a healthy baby boy named Hunter Levi after a complication-free pregnancy and delivery. As she and husband Ray took turns holding their first child, they also reflected on the path it took to get there, including heart surgeries, stress tests and careful planning with the help of medical team, including Brandon Kuebler, MD, adult congenital heart specialist with the UF Health Pediatric Cardiovascular Center and Wolfson Children’s Hospital.
“After my heart history, I felt planning was important,” said Brooke. “I knew my heart wouldn’t pump as well during a pregnancy, and I needed to make sure it was capable of pumping for two.”
Brooke was born with transposition of the great arteries (TGA), in which the two main arteries leaving the heart are reversed, changing the way blood circulates through the body. In a normal heart, the artery that pumps blood out of the heart (aorta) carries oxygen-rich blood to the body. On its return, the oxygen-poor blood is pumped from the pulmonary artery into the lungs, then returns to the heart and is propelled back out to the body by the aorta. In those with TGA, the pulmonary artery sends the oxygenated blood from the lungs back to the lungs, and the aorta gets the oxygen-depleted blood and sends that out to the body. The result is that the organs in the body don’t receive the oxygen they need to function, which is why babies appear blue. According to the Centers for Disease Control, five in every 10,000 babies in the United States are born with this condition.
In the 80s, the standard repair for the condition was the Senning procedure, which redirected the blood through the creation of a conduit made of flaps of the patient’s heart tissue. Today, the treatment has evolved to a more effective solution called an arterial switch that actually changes the anatomy of the heart back to the way it should be, reversing the aorta and pulmonary artery by cutting them and reattaching them to the proper ventricles. In the Senning procedure, which Brooke had, pediatric cardiothoracic surgeons had to do lot of sewing at the top of the heart, which is where the sinus node – the heart’s natural pacemaker – is located. A common side effect of the procedure is a disruption of the heart’s ability to keep a steady rhythm, and many patients end up needing a pacemaker. At 16, Brooke got one to ensure that she would have something in place to jolt her heart back to the right rhythm, if necessary.
“We discussed the physical demand on the heart that goes into supporting another human being, and the monitoring we would do during pregnancy including echocardiograms, weight assessment, breathing and fluid management,” said Dr. Kuebler. “She had to have her pacemaker reprogrammed not to interfere with the electrical equipment used for part of the C-section (incision) should she end up needing one. We really try to encourage our congenital heart patients to plan ahead because each case is different, and there are a lot of things we can do proactively to minimize risk, and make pregnancy as safe as possible.”
Brooke’s pacemaker was something she and Dr. Kuebler also had to factor in when assessing the demands of a pregnancy. After running some tests, Randall Bryant, MD, her pediatric electrophysiologist with UF Health Pediatric Cardiovascular Center and Wolfson Children’s Hospital, determined that the battery was starting to wear down, and she underwent surgery to replace it. Not soon after, Brooke became pregnant.
“I highly enjoyed my pregnancy,” she said. “I felt good throughout the whole thing, and being monitored by my OB/Gyn as well as Drs. Kuebler and Bryant gave me peace of mind.”
Brooke did have a C-section, not because of her heart but because after 40 hours in labor, she was never able to dilate fully, and doctors felt it best for the baby. Now five months post-partum, she is back to her annual check-ins with Drs. Kuebler and Bryant, is doing well and enjoying every moment with son, Hunter.
“It means the world to me to be a mom, to live a fully functional life and not be held back from what others can do,” said Brooke.
Fifty years ago, children like Brooke had about a 12 percent chance of surviving to adulthood; that number has risen since then to almost 90 percent. Dr. Kuebler attributes the increase to improvements in medicine and to the continuity of care now available to heart patients as they become adults. These patients continue to be seen by congenital heart specialists as adults because they are trained to recognize the intricacies involved in the repair of congenital conditions.
“Adult congenital heart patients like Brooke having children is becoming more common with the advances in pediatric heart surgery,” said Dr. Kuebler. “Not only are they achieving adulthood but they often have a good quality of life, and most are able to have families like anyone else.”