There’s a new report just published in the journal Circulation that confirms something that’s been known for a while: Congenital Heart Defect (CHD) Survivors are often lost to follow-up care. This report specifically studied CHD patients born in Quebec in 1983, a total of 643 people. The findings state that CHDers begin to fall away from Cardiac Care as early as the age of 6, and by the time they reach adulthood, 61% of all Heart Warriors aren’t seeing a Cardiologist. Those of us classified as having a severe CHD do better; by the age of eighteen 21% of us had stopped seeing a heart doctor.
While these patients had not followed through on their Cardiac Care, 93% of them continued to see a doctor for other needs. It is not known if they had been told that their heart problems had been “fixed” (a common misconception) or they were just avoiding the issue.
The Adult Congenital Heart Association‘s (ACHA) “Don’t Get Lost” program is our effort to make sure that Adults with heart defects get the care they need. Even though for many years our doctors told us we were “fixed” and sent us on our merry way, research is proving that is not true. All hearts undergo changes as they grow older, but because of our defects, some of the changes are unique to CHD Survivors. We’ll need to stay in contact with Congenital Cardiologists all of our lives.