What are the risks for adults with congenital heart disease (CHD)?

Adult congenital heart disease is a birth defect that impairs the heart’s structure. The condition is often surgically repaired in infancy or childhood but may persist or re-emerge in adulthood.

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.

Adult congenital heart disease (ACHD) is a heart problem that begins at birth and is different from the more common heart disease that people develop as they age, such as damage leading to heart attacks. Often as people with congenital heart disease age they don't get the follow-up care they need. This care is important because their heart defects may be very unique or complex and other non-specialist doctors are often not knowledgeable about the specifics of these conditions, so the ongoing care provided by an adult congenital heart specialist is very important.

Adults with congenital heart disease frequently develop risk factors for acquired heart disease, like high cholesterol, type 2 diabetes, high blood pressure, as well as other conditions associated with aging.

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Important: This content reflects information from various individuals and organizations and may offer alternative or opposing points of view. It should not be used for medical advice, diagnosis or treatment. As always, you should consult with your healthcare provider about your specific health needs.