Living With Congenital Heart Disease: Bonnie’s Story
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Bonnie’s earliest memories are of the Children's Hospital of Philadelphia (CHOP), where she was treated for a complex congenital heart defect for nearly 25 years. Now an attorney, Bonnie has transitioned her care to the Philadelphia Adult Congenital Heart Center, a joint program between CHOP and Penn Medicine Health System.
One of Bonnie’s earliest memories is playing in the office of her pediatric cardiologist at the Children's Hospital of Philadelphia (CHOP). “I would hide underneath the examination table and turn the lights off and surprise the doctor when she came in,” says Bonnie, now 28 years old.
Her fond memories of frequent childhood visits to the hospital — where she was treated from the time she was 2 days old until she was nearly 25 years old — contradict the seriousness of her early diagnosis and care.
Bonnie was born with a complex congenital heart defect known as D-transposition of the great arteries. The two largest arteries of the heart, the aorta and the pulmonary artery, are responsible for pumping blood through the body and lungs to supply oxygen to the blood. In transposition of the great arteries, the aorta and pulmonary arteries are connected to the wrong ventricles of the heart and channel blood in loops that never meet. As a result, blood that circulates the body never connects with the lungs to receive oxygen.
Babies born with this defect show signs of distress almost immediately. In Bonnie’s case, she turned blue within a few hours of birth. Doctors at the regional hospital in New Jersey where she was born initially thought she had pneumonia. A cardiologist determined her condition was far more serious and transferred her to CHOP. At one day old, Bonnie underwent an arterial switch, a surgery to connect her aorta and pulmonary arteries to the correct ventricles.
Her surgery was performed by William Norwood, MD, former Chief of Cardiothoracic Surgery at CHOP and pioneer in pediatric heart surgery.
Even in those early years when Bonnie was more closely monitored, her memories are filled with moments of playing with other kids in a game room at the hospital, and having a pen pal. They are never about being sick.
“One of my more distinct memories of being little was in the echo [echocardiography] lab, laying on a bed getting the echo performed and watching a Disney movie to pass the time, because it would take 45 minutes or an hour or more, and for a little kid to stay still for that long is difficult, but cartoons helped,” explains Bonnie.
Pediatric Cardiologist Victoria L. Vetter, MD, oversaw Bonnie's care from the time she was a day old until she was nearly 25. Dr. Vetter would play an important role in her life.
“I don’t know if it was my parents or Dr. Vetter or both but I never felt concerned. That was probably a good thing as a child," Bonnie says. "I knew I had a heart condition, but I never thought of myself as sick. I knew I had different limitations as other kids, but I could do what I wanted to do, more or less.”
Dr. Vetter encouraged Bonnie from a young age to understand her condition, and empowered her to take charge of it. Bonnie was on medication for her cardiac arrhythmia during her preteen years and into her early 20s. During college, she made the decision with Dr. Vetter to transition off the medication.
Chronic illness is not always apparent on the surface. The fact that Bonnie couldn’t have caffeine raised many questions among her peers as she studied for the bar exam. “When you tell someone 'no' to the cookie or the coffee, especially as a lawyer, that’s what raises questions," Bonnie says. "It’s a chronic illness but unless you see the scar, you cannot see what is going on. My condition doesn’t define me,” she says.
One of the more emotional challenges for Bonnie was her transition away from CHOP and Dr. Vetter and into adult care at the Philadelphia Adult Congenital Heart Center, a joint program between Children's Hospital of Philadelphia and Penn Medicine Health System. The program is located at the Ruth and Raymond Perelman Center for Advanced Medicine at Penn Medicine and treats congenital heart conditions in adults.
Dr. Vetter was instrumental in helping Bonnie define her limits in a safe way. It was when Bonnie completed her first 10-mile run that she knew she had achieved something beyond even what she thought she could do. She quickly shared her achievement with her doctor.
“At one of my last appointments with Dr. Vetter, I'd just completed the Broad Street Run and I gave her my race bib," Bonnie says. "It was a special achievement for me and I think it was an achievement for her as well. I cried when I was told she wouldn't be my doctor anymore.”
Bonnie was entering a new phase of her life — she was a working attorney, engaged to be married and considering starting a family — when she met new physician, Yuli Y. Kim, MD. Bonnie knew there were risks to pregnancy because of her heart condition and that she would need to be medically cleared before trying to get pregnant. Dr. Kim and Penn Medicine's Maternal Fetal Medicine (MFM) group assessed Bonnie's condition.
After rigorous testing and evaluation, Bonnie’s medical team determined her heart could handle the stress of pregnancy. Of course, there were additional risks to her pregnancy so she would need to be closely monitored. Bonnie was thankful for the extra care and ultrasounds of the baby boy she was carrying. She was able to get to know the entire team at Penn's MFM group, so by the time she gave birth, everyone was familiar with her heart condition. Dr. Kim worked with the MFM group to develop a delivery plan to keep Bonnie and her baby safe during and immediately after birth.
Baby Elliot came earlier than expected — and fast, after less than eight hours of labor. Bonnie’s care team had planned to induce her and give her an early epidural, to avoid a pain response in her heart. However, Elliot’s arrival upended the original plan. Thankfully Bonnie's care team was ready and flexible.
In the delivery room, Dr. Kim took pictures of the healthy baby to share with the family and Dr. Vetter.
“I feel fortunate,” says Bonnie.
“What I have is a serious health issue, but I feel fortunate to be in the position I’m in. The specialized care I've received at CHOP and now Penn should be the standard for all patients. It’s the best.”
The transition to adult care for her cardiac condition was a difficult but important one for Bonnie to make. She recommends specialized care for all adults who have a congenital heart disease.
“You can have a decade of uneventful cardiologist appointments then have something change in your condition,” explains Bonnie. “You'll only catch that if you have regular care. The average adult cardiologist is going to focus the vast majority of their practice on acquired heart disease. Adult congenital heart patients should see a specialized adult congenital cardiologist.”