Adult Congenital Heart Disease (ACHD): Why Lifelong Care Is ImportantAug. 4, 2023
By Leena Hanson
When I have a conversation with someone for the first time, they learn things like: "I am a junior at American University." "I play two instruments and I'm working on learning a third." "I'm a huge Metallica fan."
What people never learn from that first conversation is that I have congenital heart disease. I've seen a cardiologist about every year since I was 5 months old, and I plan to keep seeing one for the course of my adult life.
Sixteen weeks into my mom's pregnancy, a test done because of her age revealed a DNA anomaly that couldn't be easily identified. Her doctor said it was probably nothing, but my mom, a physician, conducted her own research. It revealed the anomaly could be a heart defect.
Follow-up testing by a high-risk obstetrician confirmed that there were fetal heart defects. The specific type couldn't be identified until I was born, when doctors confirmed the defects were the result of congenital heart disease, which occurs when the heart doesn't develop normally before birth. According to the American Heart Association, more than 2.4 million Americans have such a defect.
At 3 days old, I had surgery to fix multiple heart defects. My mom stayed in the hospital a couple additional days after the surgery to be with me. After that, she, like the rest of the family, was allowed to see me in the ICU but couldn't stay overnight.
I missed my first Thanksgiving, but at 13 days I was discharged. My entire family was there to take me home, my older brother carrying the heart-shaped pillow the hospital gave me after surgery.
At 5 months old, I had my first appointment with a pediatric cardiologist. The visit was the first of many biannual, then yearly, cardiology appointments.
At 7 years old, I did an exercise stress test, which meant running on a treadmill while the doctor monitored my heart and lung functions. Happily, the results showed that no activity restrictions were necessary.
At nine, I had to wear a holter monitor for two days to continuously record my heart's electrical activity. On the advice of my cardiologist, I let my gym coach at school know about the monitor, a type of portable electrocardiogram, even though doctors said it wouldn't affect my ability to participate in class.
The coach asked me to explain the monitor's purpose to the class in case anyone had any questions. At that age, I didn't really understand the full extent of why I needed to wear it, but I did my best, despite a 9-year-old's natural discomfort in the role of medical educator.
At 17, I had my last appointment with my pediatric cardiologist. Throughout childhood, I participated in activities without any issues, including running track and field in middle school and high school. Impressed, my cardiologist said that from a pediatric standpoint, there were no long-term issues.
I thought I was done with heart appointments forever, but my cardiologist put me in contact with a team that specializes in transitioning pediatric patients to adult care. On their advice — and that of my physician parents — I would see an adult cardiologist in two years.
"[The transition process] is very important for congenital heart disease because it's a problem of childhood that carries to adulthood and needs special care during adulthood," says Dr. Valeria Duarte, a Houston Methodist specialist in adult congenital cardiac disease (ACHD).
At 19, I had my first appointment with my ACHD cardiologist. At that point, I had moved to Washington D.C. to attend American, but I'd still come back to Houston during the summers, especially since that's the site of my new cardiologist. Even though my pediatric cardiologist had said that there should be no long-term issues, the adult counterpart still wanted to run multiple new-patient tests.
I left that first visit dreading the upcoming months of testing, especially because two years ago I'd thought I was done. But all the tests showed no issues, and I got an education in the importance of continuing care for congenital heart disease patients, especially as I get older.
"Every patient with adult congenital heart disease needs lifelong specialized care," says Dr. Duarte. "Sometimes they have very simple conditions that have been addressed, so those patients may be okay seeing a provider every two years or so, but they can determine that with their ACHD cardiologist."
Even if an ACHD patient is fortunate enough not to have any current health issues, like me, specialized care is still necessary throughout adulthood to watch for and address any future issues. Some patients are at risk for developing complications such as abnormal heart rhythms (arrhythmias), heart failure, heart infections, and more.
One important part of ACHD care is the transition process, where patients segue from pediatric care to adult care. Dr. Duarte acknowledges that adjusting to an ACHD specialist when a patient has been so involved with their pediatric cardiologist can be difficult.
"There is a relationship of trust that has been built over two decades with the pediatric cardiologist, sometimes more," Dr. Duarte says. "The transition can trigger some fears, and it takes time for the patients to build a new relationship with the other provider."
She also talks about how her team works with those patients. "We are cognizant of that transition, and we try to meet patients halfway," she explains.
At 20 years old, I am grateful for what my surgery and continued care has given me, not least the opportunity to participate in physical activities, including consistent exercise and intramural flag football at college. They have also allowed me to participate — and take leadership roles — in multiple college organizations. And, sentimentally, they made it possible for me to attend a Metallica concert with my family this summer.
The way I look at it, continuing to see an ACHD cardiologist, making sure to monitor issues that can arise later in life, is the best way to keep making treasured memories.
When I was a kid, I was afraid of doctor visits because I would see them as a burden, an obstacle to living a normal life. Now that I've gotten older, I know that continued ACHD care provides a blueprint to living a normal life.