Transitioning from Pediatric to Adult Cardiology
By Jennifer Walker
When I was about 9 months old, my pediatrician heard a murmur while listening to my heart. He assured my mom it was an innocent murmur and that I would most likely grow out of it. That was that. But once my family moved when I was a toddler, a new doctor heard the murmur and immediately referred me to a pediatric cardiologist. That innocent murmur turned out to be aortic stenosis from a bicuspid aortic valve! My family has a long history of acquired heart conditions, or conditions that someone is not born with, so my parents had to quickly adjust to life with a heart child.
I had a normal childhood. I loved gymnastics, art and sneaking onto my mom’s laptop. I’d just receive a few funny stares when I had to explain to other kids at school why I couldn’t do certain activities with them. I visited my cardiologist every two years for an echocardiogram and EKG. My best friend also has a bicuspid aortic valve, so she was always there to support me and listen to my rants about doctor’s appointments.
By the time I got to high school, I knew I would eventually graduate from my pediatric cardiology office. I poured my energy into my high school’s newspaper and advanced classes to distract myself from my heart defect.
And then the time came. I graduated high school in 2019 and graduated from my pediatric practice. I felt like I was swimming alone in an ocean, only knowing what my defect was and how I needed to keep up with seeing a cardiologist. I had no idea what to expect from seeing an adult congenital cardiologist.
After spending a year at university, I decided to transfer schools and move back home. That summer (during the COVID-19 pandemic too, oh my goodness), I visited an adult congenital cardiologist.
It was totally fine.
My current cardiologist is one of my favorite doctors. I go once a year for echos now. He has kids of his own, so I feel like he always views my treatment plan remembering that I’m someone’s daughter. All the nurses and my doctor are real with me. I’ve had to get more tests done since transitioning to adult care, but that’s about it.
I will most likely need surgery to replace my aortic valve someday, but I know the hospital team will support me. If you’re getting ready to age out of pediatric care, everything will be fine! For friends and family of someone transitioning to adult care, the best way to support us is to just listen.
Now a few years on from that first appointment with an adult cardiologist, I’m a junior in college studying health informatics and UX design. I hope to work for a hospital system once I graduate, using information and technology to improve the patient experience. I know how crazy dealing with doctor’s appointments can be. If I can improve the experience for another heart patient someday, then I will have done my job.
Rock on, heart squad!
For more information on this health topic, visit heart.org.
Would you like help dealing with heart or stroke conditions -- either yours or someone else’s? Join us in the AHA’s Support Network! We are an online community of patients, survivors and caregivers where you can share your experience while getting encouragement, hope and informational resources from others who have been there. Membership is free and the benefits can be priceless. Register today.