Many adults with congenital heart disease are unaware that they may be at risk. Because they may mistakenly believe that their corrective surgeries or treatments were permanent, they have not sought follow-up care with a cardiologist as adults and effectively “fall off the map.” Consequently, in many cases adult congenital heart disease is not discovered until a heart murmur or abnormal heart rhythm is detected during a routine physical examination. Some people may develop warning signs such as shortness of breath or fatigue, but since these symptoms are fairly common, they may delay care until the symptoms worsen.
When people with adult congenital heart disease are finally seen by doctors, their conditions have often progressed to the point where they are very complicated. Among the most serious problems are irregular heartbeats, enlarged hearts and heart failure. In the most severe cases, sudden death may occur.
Given their unique health challenges, congenital heart disease patients should be monitored throughout their lifetime by a physician with the necessary specialized expertise, to monitor the disease and prevent complications.