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What is Adult Congenital Heart Disease?

Congenital [kuh n-jen-i-tl] heart disease (CHD) refers to problems with the structure of the heart or the blood flow through the heart. The most common CHDs change the way that blood flows through your heart. CHD is the most common birth defect, and affects about 8 out of every 1,000 newborns. Its cause is usually unknown.

Congenital means a condition that you are born with, so a congenital heart defect is a defect that was there from the time you were born. A CHD is when one or more of the blood vessels or structures of the heart do not form as they should during pregnancy.

Congenital heart disease is usually diagnosed either shortly after birth or during childhood. Most adults who have a congenital heart defect know about it, and have been treating it, by the time they reach their adult years. The symptoms may persist for the rest of your life, so you may still feel symptoms well after childhood. People who are born with a CHD may need to have treatment or care for it for the rest of their lives. Make sure to talk to your doctor about your specific defect(s), how often you should see your doctor, and what kind of care or treatment you might need.

In some cases, the symptoms may not show up until your adult years, at which point it is a good idea to see your doctor to develop a treatment plan.

If the CHD is serious—called a critical congenital heart defect (CCHD)—it needs to be detected and repaired early in a baby’s life to help prevent other health problems. Newborn screening with pulse oximetry [ok-sim-i-tree] can allow for early detection.

There are many types of congenital heart defects. Some are simple, such as a hole in the wall that separates the right and left sides of the heart or a narrowed valve that slows down blood flow. Other heart defects are more complex, such problems with the location of blood vessels leading to and from the heart.

Symptoms

Many congenital heart defects have very few, if any, symptoms. In fact, symptoms are often so mild that doctors may not detect them during a regular physical exam.

If a defect has symptoms, they depend on what kinds of defects you have, as well as how many, and how severe they are. The most common signs and symptoms include:

  • Cyanosis [sahy-uh-noh-sis], a blue tint to the lips, skin, and fingernails caused by poor blood circulation
  • Rapid breathing
  • Poor blood circulation
  • Fatigue (being very tired)
  • Heart murmurs
  • Swelling of body tissues or organs, also called edema [ih-dee-muh]

Many congenital heart defects force the heart to work harder than normal. Because the heart is working harder than normal, it can sometimes lead to heart failure. Heart failure is when the heart is not able to pump enough blood to fuel the body’s needs. Some of the symptoms of heart failure include:

  • Extreme tiredness, especially during activity
  • A buildup of blood or other fluid in the lungs
  • Shortness of breath
  • Trouble breathing
  • Swelling, mostly in the feet, ankles, legs, abdomen, and/or veins in the neck

When to See a Doctor

You should see a doctor if you think you have a congenital heart defect to help prevent heart failure and to begin treatment, if needed.

Causes

Most of the time, doctors do not know what causes congenital heart defects. CHDs may be passed from parent to child genetically, but this is not always the case.

Mothers who smoke while they are pregnant have a higher chance of having a child who has congenital heart defects. Doctors advise all pregnant women to stop smoking as soon as they can, for the health of the unborn child.

Diagnosis and Tests

Your doctor will ask about any symptoms you may have, including how long you have had them and how severe they are. Your doctor will also conduct a physical exam. If your doctor thinks you may have a CHD, they will order more tests to help confirm the diagnosis.

These tests may include:

  • An electrocardiogram [ih-lek-troh-kahr-dee-uh-gram] (ECG), which is a test that monitors the timing of the heartbeat
  • Transesophageal [trans-ee-sof-uh-GEE-al] echocardiogram, which is a special ultrasound that creates images of your heart
  • A Holter monitor, which is a mobile ECG device that is worn for at least a day
  • An event monitor, which is a portable ECG device that is worn for a few weeks
  • Chest x-ray, which helps your doctor examine the chest and lungs better
  • Pulse oximetry [ok-sim-i-tree], or “pulse ox” for short, which is a special device that is placed on your fingertip that reports the amount of oxygen in your blood
  • Exercise stress test, which is where an ECG is done while you are walking or running on a treadmill to help the heart beat faster
  • A non-exercise stress test, which is where an ECG is performed right after you take medicine to help the heart beat faster, like you are working hard
  • Cardiac CT scan, or MRI, which will help your doctor collect images of your heart and chest so they can see what is going on
  • Cardiac catheter [CATH-et-er], which is when a doctor makes a small hole in one of your veins, inserts a small, thin, flexible tube with a camera mounted on it into the vein, and uses it to view your heart

Treatments

Although some people who have congenital heart defects don’t need treatment, it is still a good idea to see your doctor to make sure. If you do not need treatment, your doctor may still want to observe your condition to make sure the defect does not get worse.

If you need treatment, the type of treatment will depend on how many birth defects you have and how serious they are. You doctor will also base your treatment on your age and general health. Your doctor may consider medication, catheter procedures, or surgery.

Your doctor can prescribe medications that help your heart function better. These medications can help prevent blood clots and may also help control an irregular heartbeat.

Catheter procedures are where a small hole is poked in one of your veins, and then a small, thin, flexible tube is put into the vein. Your doctor will not have to surgically open your chest, and the only wound is a small puncture in your vein, so recovery is fairly easy. Your doctor can do many things with catheter procedures, such as repair some holes, insert stents (tubes that hold your blood vessels open), or place balloons that expand blocked blood vessels. If you need a catheter procedure, talk to your doctor about what the procedure will include and what to expect.

Your doctor may recommend open heart surgery if your problems can’t be fixed using a catheter. If your doctor recommends cardiac surgery, it will be performed by a cardiac surgeon. A cardiac surgeon can close holes in the heart with stitches or a patch, widen arteries or openings in heart valves, repair or replace heart valves, and correct more serious problems with the heart, such as issues with where the blood vessels are placed, or how they formed.

Although very rare, sometimes people are born with heart defects that are too serious to be fixed. These people may need a heart transplant, which is where a damaged heart is replaced with a healthy heart from someone that has died and donated their organs.

If you are considering having children, discuss the idea with your doctor to make sure you can work together to create a plan that helps you have a safe, full-term pregnancy. You can also ask your doctor about early testing options, as many heart defects can be passed on from parent to child.

Prevention

Because doctors are not sure what causes congenital heart disease, there are very few ways to prevent it. There is a significant link between smoking while pregnant and children who are born with these defects, which is one of the many reasons that doctors advise pregnant women to quit smoking.
Congenital heart disease (CHD) refers to a problem with the structure of the heart or the blood flow through the heart. CHD is the most common birth defect, affecting about 8 out of every 1,000 newborns. Its cause is usually unknown.
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