Congenital heart disease in adults
Congenital heart disease in adults
Congenital heart disease (congenital heart defect) is an abnormality in your heart's structure that you're born with. Congenital heart disease was often fatal, but it's far more treatable today. Although congenital heart disease is often considered a childhood condition, advances in surgical treatment mean most babies who once died of congenital heart disease survive well into adulthood.
While medical advances have improved, many adults with congenital heart disease may not be getting proper follow-up care. If you had your congenital heart defect repaired as an infant, don't consider yourself out of the woods. Find out 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.
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 heart defect. Some typical congenital heart disease symptoms you may have as an adult include:
When to see a doctor
How the heart works
How heart defects develop
A baby's heart starts beating just 22 days after conception. At that point in time, the heart has a simple tube shape. Between days 22 and 24, the heart begins to bend to the right and fold in on itself to form a loop. By 28 days after conception, the tube has a vaguely heart-like shape with structures that will form into the heart's two sides and the large blood vessels that carry blood in and out of them.
It's usually at this point in a baby's development that heart defects may begin to develop. Researchers aren't sure exactly what causes defects to begin, but they think some medical conditions, medications and genetics may play a role.
Why congenital heart disease resurfaces in adulthood
There are many reasons why heart defects re-emerge in adults. In some cases, the treatment you received in childhood may have been successful, but the problem worsens later in life. It's also possible that problems in your heart, which weren't serious enough to repair when you were a child, have worsened and now require treatment.
There are other complications of childhood surgeries to correct congenital heart disease that can occur later in life. Many treatments to repair heart defects may leave scar tissue behind in your heart that causes an increased chance of abnormal heart rhythm (arrhythmia).
Congenital heart disease often results from problems early in your development, often before you were born. Certain environmental and genetic risk factors may play a role in the development of your heart defect. They include:
Congenital heart disease complications may not develop until years after initial 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:
Preparing for your appointment
If you think you may have a heart defect, or you've developed complications from a previously diagnosed heart defect, make an appointment with your doctor. If you're having worrisome symptoms, such as chest pain or shortness of breath, seek emergency medical attention immediately.
Because appointments can be brief, and because there's often a lot of ground to cover, it's a good idea to be prepared for your appointment. Here's some information to help you get ready for your appointment, and what to expect from your doctor.
What you can do
Your time with your doctor is limited, so preparing a list of questions will help you make the most of your time together. List your questions from most important to least important in case time runs out. For congenital heart defects, some basic questions to ask your doctor include:
In addition to the questions that you've prepared to ask your doctor, don't hesitate to ask questions during your appointment at any time that you don't understand something.
What to expect from your doctor
Tests and diagnosis
If your doctor thinks you have a congenital heart defect, or that your congenital heart defect may be to blame for more recent health problems, he or she will perform a physical exam, including listening to your heart with a stethoscope.
If your doctor hears an abnormal heartbeat, that's one clue that could mean 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:
Treatments and drugs
Because congenital heart disease can be mild or severe, treatment options vary. Your doctor may suggest a treatment to attempt to correct the heart defect itself, or treat complications caused by the defect. Treatments your doctor may recommend include:
Follow-up care is important
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.
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 regular screenings for complications. 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 and pregnancy
It's important for both men and women, who could 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.
Coping and support
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:
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.
Last Updated: 2011-05-13
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