Recently, we were at the cardiologist's office for a routine checkup for my 9 year old daughter. She was born with an 8 mm ASD, a 10mm VSD, aortic incompetence, and W.P.W. She had open heart surgery at 2 to close the holes, and then open heart surgery at 4 to do the Ross procedure. Since then she has been healthy, and in great shape heart wise. We're now on yearly visits.
I happened to joke that she was growing fast and would be at the practice across the street in no time (there is an adult cardiology practice across the street). He commented that no, he'd eventually transfer her to the adult congenital heart disease clinic located about 2 hours away.
Obviously, there is a lot of time yet, and we will obviously follow the recommendations of the cardiologist who has been responsible for our daughter's care, but the comment got me thinking--- are there specific guidelines on when a child-now-adult is best followed by an ACHD specialist instead of a general adult cardiologist? Who sets those guidelines? How easy is it to find an ACHD specialist....especially as children grow into adults and move around? How important is it for a child with a similar conditions to my daughter to be followed by an ACHD vs. an adult cardiologist?
I had thought that aortic valve disease was a very common problem in the adult cardiology population, so it never crossed my mind that she couldn't just see a general cardiologist when she was a grown-up. I presumed they have familiarity with that cardiac disease process...perhaps not?
Dear t5kids: In an ideal world, all of our patients with congenital heart disease would be followed by adult cardiologists familiar with the management of congenital heart disease. Unfortunately, there are not yet enough adult specialists trained in this area to accommodate the growing need. Therefore, referral to a adult congenital heart disease specialist is currently tailored to the needs of the specific patient. There are many types of congenital heart disease that adult cardiologists feel very comfortable managing, such as post-operative atrial and ventricular septal defects, and valve replacements. The difference in your daughter is the fact that she underwent a Ross procedure, which, involves replacing the patient’s aortic valve with their own pulmonary valve, reimplanting the coronary arteries and placing a homograft between the right ventricle and pulmonary artery branches. There are long term issues that need to be watched in this situation, including narrowing of the pulmonary homograft over time, progressive dilation of the neo-aorta, and assuring preserved coronary flow. An adult cardiologist who does not handle Ross patients on a routine basis would not be familiar with these long term issues that are watched for in this group of patients. I agree with your cardiologist that it is preferred that your daughter be followed by an ACHD specialist, even if it means travelling a distance every year.
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