Congenital heart disease: Don't overlook condition as an adult

You may overlook congenital heart disease because you were treated for it as a child and probably think you're cured. But here's why you shouldn't ignore it.

Congenital heart disease, once almost a guaranteed death sentence for babies born with heart defects, is far more treatable today than in the past. Although congenital heart disease is often considered a childhood disease, advances in surgical treatment mean most babies who once died of congenital heart disease are surviving well into adulthood. Some researchers estimate there are more adults than children living today with congenital heart disease.

Nearly 2 million adults and children in the United States have some form of congenital heart disease. Congenital heart disease is the most common form of birth defect, affecting about one out of every 100 babies. As treatments continue to improve, it's likely the number of adults with congenital heart disease will steadily rise.

While medical advances have improved, many adults with congenital heart disease may not be getting proper follow-up care. If you had a congenital heart defect repaired as an infant, don't consider yourself out of the woods. Learn if and when you should check with your doctor, if you're likely to have complications or if you're at greater risk of other heart problems as an adult.

How do I know if my congenital heart disease is causing problems now?

Congenital heart disease encompasses a wide variety of heart defects that are present at birth. Some are minor, while others require treatment. A congenital heart disease diagnosis is sometimes made during pregnancy, especially if special screening tests have been done. Many severe forms of congenital heart disease are detected at birth or in the first few months of life. However, symptoms or signs of congenital heart disease may not show up until later in life. They may recur years after you've had treatment for a defect. Some typical signs and symptoms you may have as an adult that may be related to congenital heart disease include:

Abnormal heart rhythms (arrhythmias)
A bluish tint to the skin (cyanosis)
Shortness of breath
Tiring quickly upon exertion
Dizziness or fainting
Swelling of body tissue or organs (edema)

A heart murmur is one clue your doctor may find that could indicate you have a lingering heart defect issue. After detecting the murmur, your doctor could order other tests to diagnose its cause or get a better idea of what's going on in your heart. Possible tests include:

Echocardiogram. An echocardiogram uses sound waves to produce images of the heart. Your doctor can use these images to identify heart abnormalities.
Cardiac catheterization. Your doctor may use this test to check blood flow in your heart. A catheter is inserted into an artery, starting in your groin, neck or arm. It's then carefully threaded to your heart chambers under guidance of an X-ray machine that shows real-time images of your body. Dye is injected through the catheter, and the X-ray machine makes images (angiograms) of your heart and blood vessels. The pressure in the heart chambers also can be measured during this same procedure.
Electrocardiogram (ECG). This test records the electrical activity of your heart. Some heart defects can disrupt the electrical signals in your heart, which in turn cause abnormal heart rhythms called arrhythmias. Patterns of the electrical signals can also provide clues about the presence of various forms of congenital heart disease.
Chest X-ray. X-ray images help your doctor further evaluate your heart and lungs.
Cardiac magnetic resonance imaging (MRI). Cardiac MRI is an imaging technique that uses magnetic fields and radio waves to create images of your heart.
Exercise stress test. An exercise stress test may be performed to check your overall level of conditioning and your heart's electrical activity, heart rate and blood pressure during exercise. For this test you'll exercise on a treadmill or bicycle, sometimes with special sensors to check how much oxygen you use during exercise.

Congenital heart disease rarely cured

One of the biggest myths many adults with congenital heart disease have is they no longer have to worry about congenital heart disease. Many think they've either outgrown their condition or that treatment they had as a child cured them. But this is rarely true.

If you have congenital heart disease, even if you've had surgery as a child, you're not cured. This doesn't mean you face a lifetime of problems. However, it does mean you're at increased risk of developing complications, such as infections of the heart (endocarditis) or dangerous abnormal heart rhythms. Some problems might require surgical treatment as you get older.

Follow-up care for congenital heart disease is essential

If you had your congenital heart defect or congenital heart disease treated as a child, it's important to have lifelong follow-up care, especially if you had corrective heart surgery. This follow-up care could be as simple as having periodic checkups with your doctor, or it may involve more comprehensive testing. The important thing is to discuss your care plan and make sure you follow all recommendations.

Ideally, your care will be done by cardiologists trained in following adults with congenital heart defects. This may be a challenge for some because there's currently a shortage of cardiologists with such expertise, as well as a limited number of centers that specialize in following adults with congenital heart disease.

Congenital heart disease problems that can arise as an adult

Congenital heart disease complications may not arise until years after treatment. Because the severity of congenital heart disease varies widely, the range of possible complications does, too. However, some common problems or complications that may develop in adulthood include:

Abnormal heart rhythms (arrhythmias). Heart rhythm problems (arrhythmias) occur when the electrical impulses in your heart that coordinate your heartbeats don't function properly, causing your heart to beat too fast, too slow or irregularly. Heart rhythm problems are common in people who have congenital heart disease. This can be because your heart defect itself interferes with the normal electrical impulses, or because previous corrective surgery left scar tissue that can cause arrhythmias. In some people, these arrhythmias can become severe, even causing sudden cardiac death if not properly treated. The treatment of arrhythmias has improved in recent years, so it's important you seek appropriate follow-up care.
Heart infections (endocarditis). The inside of your heart contains four chambers and four valves, which are lined by a thin membrane called the endocardium. Endocarditis is an infection of this inner lining. Some heart defects interrupt the smooth flow of blood in your heart, making it easier for bacteria to gather. Endocarditis typically occurs when bacteria or other germs from another part of your body, such as your mouth, enter your bloodstream and lodge in your heart. Left untreated, endocarditis can damage or destroy your heart valves or trigger a stroke. The consequences can be life-threatening. Your doctor may prescribe antibiotics to lower your risk of developing endocarditis.
Stroke. Stroke occurs when the blood supply to a part of your brain is interrupted or severely reduced, depriving brain tissue of oxygen and nutrients. Within a few minutes, brain cells begin to die. Some congenital heart defects increase your risk of stroke due to an abnormal connection in the heart allowing a blood clot from a vein to pass through your heart and travel to your brain. Certain heart arrhythmias can also increase your chance of blood clot formation leading to a stroke.
Heart failure. Heart failure, also known as congestive heart failure (CHF), means your heart can't pump enough blood to meet your body's needs. Some types of congenital heart disease can lead to heart failure. Over time, conditions such as coronary artery disease or high blood pressure gradually sap your heart of its strength, leaving it too weak or too stiff to fill and pump efficiently. Medications can improve the signs and symptoms of chronic heart failure and lead to improved survival. Lifestyle changes such as exercising, reducing salt intake, managing stress, treating depression and especially losing excess weight also can help prevent fluid buildup and improve your quality of life.
Pulmonary hypertension. This is a type of high blood pressure that only affects the arteries in the lungs. Some congenital heart defects can cause more blood to flow to the lungs, increasing pressure. As the pressure builds, your heart's lower right chamber (right ventricle) must work harder to pump blood through your lungs, eventually causing the heart muscle to weaken and sometimes to fail completely. If this problem isn't caught early, permanent lung artery damage can occur and result in a condition known as Eisenmenger's syndrome.
Heart valve problems. In some types of congenital heart disease, the heart valves are abnormal. Some heart defects may be minor early in life but cause problems in adulthood. In other cases a valve that has been repaired or replaced in childhood may require further surgery as an adult. Other types of surgical or catheter-based treatments performed in childhood also may require repeat procedures later in life.

Congenital heart disease treatment as an adult

There's a wide variation in the types and severity of congenital heart disease. Your doctor may suggest a treatment to attempt to correct the heart defect itself, or treat complications caused by the defect.

Relatively minor heart defects may require only periodic checkups with your doctor. Other types of congenital heart disease can worsen in adulthood, even if corrective surgery was done while you were a child. In these cases, medication or repeat surgery may be needed. Some procedures can now be done less invasively with the use of catheters. If you do have surgery or other forms of treatment, you'll still need long-term follow-up care or monitoring.

Congenital heart disease and pregnancy

Women with congenital heart disease who wish to become pregnant should talk with their doctors before becoming pregnant. They should discuss possible risks, as well as any special care they might need during pregnancy. Most women with congenital heart disease have normal pregnancies.

It's important for men and women who conceive to know that if they have congenital heart disease, there's an increased risk of passing on some form of congenital heart disease to their children. Your doctor may suggest genetic counseling to help you predict the risk of passing on inherited forms of congenital heart disease.

Taking care of yourself if you have congenital heart disease

One important thing to do if you're an adult with congenital heart disease is to become educated about your condition. Topics you should become familiar with include:

The name and details of your heart condition and its past treatment
How often you should be seen for follow-up care
Information about your medications and their side effects
How to prevent heart infections (endocarditis)
Exercise guidelines and any work restrictions
Birth control and family planning information
Health insurance information and coverage options
Dental care information, including whether you need antibiotics before dental procedures
Symptoms of your congenital heart disease and when you should contact your doctor

Each person with congenital heart disease has a different set of risks and concerns, so it's hard to generalize what's best for you. This is why it's so important to have regular communication with your doctor to discuss self-care options, including what activities you can do safely or what you should avoid. Thousands of adults with congenital heart disease lead full, long and productive lives. But it's important not to ignore your condition. Become informed about your disease; the more you know, the better you'll do.