Congenital defects in older children and adolescents

Congenital heart disease (congenital heart defect) is an abnormality in your heart’s structure that you’re born with. 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 a congenital heart defect repaired as an infant, you likely still need care as an adult.

Symptoms
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 common congenital heart disease symptoms you may have as an adult include:

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

Most heart defects develop when a baby is still in the womb. During the first month of gestation, the fetal heart begins beating. At this point, the heart is just a vaguely heart-shaped tube. Soon the structures that will form into the heart’s two sides and the large blood vessels that carry blood in and out of them develop.

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.

Some adults may find that problems with their heart defects arise later in life, even if their defects were treated in childhood. This is because heart defects are seldom cured — they are often repaired, so your heart function is improved, but it’s often not completely normal.

There are many reasons why heart defects re-emerge in adults. In some cases, the treatment you received in childhood may have been successful then, 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).

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:

Regular checkups: Relatively minor heart defects may require only periodic checkups with your doctor to make sure your condition doesn’t worsen. Ask your doctor 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 may also need to take medications to prevent blood clots from forming or to help 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 procedures that can be done using catheterization, the doctor inserts a thin tube (catheter) into a leg vein and guides it to the heart with the help of X-ray images. Once the catheter is positioned at the site of the defect, tiny tools are threaded through the catheter to the heart to repair the defect.

Open-heart surgery: If catheter procedures aren’t enough to fix your heart defect, your doctor may recommend open-heart surgery.
Heart transplant. If a serious heart defect can’t be repaired, a heart transplant may be an option.