Connecting Patients: Talking about congenital heart disease
Congenital heart disease (congenital heart defect) is one or more abnormalities in your heart's structure that you're born with. This most common of birth defects can alter the way blood flows through your heart. Defects range from simple, which might cause no problems, to complex, which can cause life-threatening complications.
Advances in diagnosis and treatment mean most babies who once died of congenital heart disease survive well into adulthood. However, signs and symptoms of the condition can occur in adults later in life, even those who had treatment as a child.
If you have congenital heart disease you might need care throughout your life. Check with your health care provider to determine how often you should be seen as an adult.
Depending on the severity of your congenital heart disease, treatment might be aimed at correcting the congenital heart defect or dealing with complications caused by the defect. Treatment might include:
Watchful waiting. Relatively minor heart defects might require only periodic checkups with your health care provider to make sure your condition doesn't worsen. Ask your health care provider how often you need to be seen.
Medications. Some mild congenital heart defects can be treated with medications that help the heart work more efficiently. You might also need medications to prevent blood clots or to control an irregular heartbeat.
Implantable heart devices. Devices that help control your heart rate (pacemaker) or that correct life-threatening irregular heartbeats (implantable cardioverter-defibrillator, or ICD) can help some of the complications associated with congenital heart defects.
Special procedures using catheters. Some congenital heart defects can be repaired using catheterization techniques, which allow the repair to be done without surgically opening the chest and heart. In these procedures, a thin tube (catheter) is inserted into a leg vein and guides it to the heart with the help of X-ray images. Once the catheter is in position, the specialist threads tiny tools through the catheter to repair the defect.
Open-heart surgery. If catheter procedures can't fix your heart defect, your doctor might recommend open-heart surgery.
Heart transplant. If a serious heart defect can't be repaired, a heart transplant might be an option.
Many adults with congenital heart disease believe they've either outgrown their condition or that childhood treatment cured them. This might not be true, depending on the type of defect.
If you have congenital heart disease, even if you had surgery as a child, you're at risk of developing complications. So 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 health care provider, or it may involve regular screenings for complications. The important thing is to discuss your care plan with your health care provider and make sure you follow all recommendations.
Ideally, a cardiologist trained in treating adults with congenital heart defects will manage your care.