Caring for Adults with Congenital Heart Defects
Nearly 1 million adults in the U.S. are living with congenital heart disease. Congenital heart disease is a defect in the heart or blood vessels that develops before birth. Some cases of congenital heart disease can be identified even before birth, while others may go undiagnosed until adulthood.
If you have been diagnosed with congenital heart disease, either as an adult or as a child, you may have experienced a range of symptoms including:
- Shortness of breath
- Easily fatigued, particularly during exercise
- Changes in heart rate
Symptoms may vary based on the type of adult congenital heart disease you have been diagnosed with or you may have no symptoms at all. In many cases, the first indication of heart defect is a heart murmur or abnormal heart rhythm heard during a physical examination. Your physician may order additional tests such as an echocardiogram or MRI to confirm the diagnosis.
Types of adult congenital heart disease
There are many types of adult congenital heart disease. Symptoms and treatment are based on the severity and type of defect in the heart or blood vessels. Some of the most common types of congenital heart disease include:
- A defect in the walls of the heart
A hole between the atria and ventricles—often called a hole in the heart—which can result in abnormal mixing of oxygenated and unoxygenated blood. This defect may repair itself over time, but not always.
- Defects of the valves of the heart,
Including narrowing of the valves that can interfere with normal blood flow. The most common of these, pulmonary valve stenosis, is a narrowing of the pulmonary valve that allows blood to flow from the right ventricle into the pulmonary arteries to the lungs, where it picks up oxygen to be carried to the rest of the body. The lack of oxygen leads to cyanosis, which is when the skin has a slight blue or purple color.
- Malformations of the heart’s chambers or arteries.
This may include thickened muscular walls, underdeveloped heart chambers or arteries that are improperly connected to the heart such as transposition of the great vessels.
- Multiple defects that occur together
This includes tetralogy of Fallot, a condition where the heart has a hole between the ventricles, narrowed veins, an overriding aorta and a thickened right ventricle.
Treatment for adult congenital heart disease
The management of adult congenital heart disease has come a long way and most patients can lead normal, active lives. You may have had surgery for your condition as an infant or child and need further interventions as an adult. Very minor defects may not need any treatment at all. If your adult congenital heart disease does require treatment, your treatment will depend on the severity of your condition and potential complications.
Treatment options include:
- Medical management of symptoms
- Cardiovascular and thoracic surgery to repair defects
- Minimally invasive robot-assisted cardiovascular surgery
- Interventional Cardiology to open a narrow vessel or close an abnormal one
- Electrophysiology to correct abnormal heart rhythms