Congenital Heart Disease

What is congenital heart disease?

Congenital heart disease (CHD) is a term used to describe defects in the structure of the heart. It may also be called congenital heart defect. Congenital means you were born with the heart defect. The defect may include a hole in part of the heart or narrowing of arteries connected to the heart. Blood may not be able to flow to your heart correctly, or it may not flow through your heart correctly. The defect may be mild or severe. A congenital heart defect should be monitored regularly, even if you do not have problems.

What are the signs and symptoms of congenital heart disease?

You might be having symptoms for the first time as an adult. You also might have symptoms even if you had a heart defect repaired as a child.

• Shortness of breath, or becoming tired when you exercise.
• Abnormal heart rhythm.
• Blue skin or nails.
• Swelling in your legs, ankles, or fingers.
• Feeling dizzy or faint.

How is congenital heart disease diagnosed? 

Your heart defect may not be found until you are an adult. Tell your healthcare provider about your symptoms. Tell him or her if you have had the symptoms before, and how long they lasted. Your healthcare provider will examine you and listen to your heartbeat and breathing. If he or she hears a murmur or other sounds, he or she may use the following tests to check for CHD:

• Blood tests measure the amount of oxygen in your blood. A heart defect can lower your blood oxygen level.
• X-ray, CT, or MRI pictures may show the size and shape of your heart. You may be given contrast liquid to help your heart show up better in the pictures. Tell your healthcare provider if you have ever had an allergic reaction to contrast liquid. Do not enter the MRI room with anything metal. Metal can cause serious injury. Tell your healthcare provider if you have any metal in or on your body.
• A Doppler ultrasound checks the blood flow in your heart. A small metal disc with gel is placed on your chest. The disc helps your healthcare provider hear the blood flow.
• An EKG records your heart rhythm and how fast your heart beats. It is used to check for heart enlargement and other problems with blood flow.
• A Holter monitor is also called a portable electrocardiography (EKG) monitor. It shows your heart’s electrical activity while you do your usual activities. The monitor is a small battery-operated device that you wear. It will show how fast your heart beats and if it beats in a regular pattern.
• A stress test helps your healthcare provider see how well your heart works when it is under stress. Your heart function may be tested while you walk on a treadmill or ride a stationary bicycle. Medicine may be used instead to put your heart under stress.
• Transesophageal echocardiogram (TEE) is a type of ultrasound that shows pictures of the size and shape of your heart. It also looks at how your heart moves when it is beating. You may need a TEE if your heart does not show up very well in a regular echocardiogram. You may also need a TEE to check for certain problems such as blood clots or infection inside the heart. A tube is placed in your mouth and moved down into your esophagus. The tube has a small ultrasound sensor on the end. Your heart appears clearly on the monitor because your esophagus is right next to it.
• Cardiac catheterization is used to show the blood vessels in your heart. A catheter is threaded into your heart through a blood vessel in your arm, leg, or neck. Contrast liquid is injected into an artery. Then X-rays of your blood flow are taken. Tell the healthcare provider if you have ever had an allergic reaction to contrast liquid.

How is congenital heart disease treated? 

Your healthcare provider may want to monitor your heart over time. You will need to have regular checkups. Your healthcare provider can tell you how often to go in, and which tests you will need. Any of the following may be used if your condition needs to be treated:

• Medicines may be used to help your heart beat more regularly. You may need to take heart medicines for several years. Medicine may be given to flush extra fluid from your body. This medicine may make you urinate more often. You may also need blood thinning medicine to prevent blood clots. This medicine increases your risk for bleeding and bruising.
• An implantable device can help your heart beat normally. A pacemaker can control your heartbeat. An implantable cardioverter-defibrillator (ICD) can make your heart beat in a regular rhythm.
• A catheter procedure may be used to repair a defect. You might have had a defect repaired when you were a child, and it might need to be repaired again. A catheter is a long, thin tube. Your healthcare provider will move the catheter through a vein or artery until it is near the defect. To widen a narrowed area, he or she may inflate a small balloon device attached to the catheter. This will widen a narrowed valve in the heart.
• Open heart surgery may be needed to repair the defect if a catheter procedure cannot be done. You may need surgery to have a heart valve repaired or replaced. Surgery can also help repair problems from blood vessels that did not form correctly. A heart transplant may be used if the defect is severe and other treatments do not work. You may need more surgery over time.

How can I manage congenital heart disease?

• Do not smoke. Nicotine and other chemicals in cigarettes and cigars can cause heart and lung damage. Ask your healthcare provider for information if you currently smoke and need help to quit. E-cigarettes or smokeless tobacco still contain nicotine. Talk to your healthcare provider before you use these products.
• Weigh yourself every morning. Use the same scale, in the same spot. Weigh yourself after you use the bathroom, but before you eat or drink anything. Wear the same type of clothing each day. Do not wear shoes. Keep a record of your daily weights so you will notice sudden weight gain. Bring the record to appointments with your healthcare providers. Swelling and weight gain are signs of fluid retention.
• Maintain a healthy weight. Extra weight can cause your heart to work harder. Ask your healthcare provider how much you should weigh. He or she can help you create a weight loss plan if you need to lose weight.
• Exercise as directed. Exercise is important for heart health. Your healthcare provider can tell you how much exercise you need each day and which exercises are best for you. You may not be able to do some physical activities or sports. The decision may depend on the type of defect you have and if it was repaired.
• Eat heart healthy foods. Healthy foods include fruits, vegetables, whole-grain breads, low-fat dairy products, lean meats, and fish. Choose fish that are high in omega-3 fatty acids, such as fresh tuna or salmon. Limit foods that are high in fat. Your healthcare provider may also recommend you limit the amount of sodium (salt) you have each day. Ask for more information on heart healthy and low-sodium diets.
• Limit or do not drink alcohol. Alcohol can increase your blood pressure. Limit alcohol to two drinks per day if you are a man, or one drink per day if you are a woman.
• Keep your teeth clean and healthy. Get regular checkups at the dentist and brush your teeth as directed. Cavities increase your risk for endocarditis (infection in the lining around your heart). You may need an antibiotic before you have dental procedures. The antibiotic can help prevent an infection caused by bacteria.
• Talk to your healthcare provider about pregnancy. CHD can cause certain problems during pregnancy. Women with CHD should work with healthcare providers to plan and monitor pregnancy. Women may need to get a vaccine to prevent rubella during pregnancy. Both men and women can pass genes for certain congenital heart defects to their children. Talk to your healthcare provider about this risk.

Call 911 for any of the following:

• Numbness or drooping on one side of your face.
• Weakness in an arm or leg.
• Confusion or difficulty speaking.
• Dizziness, a severe headache, or vision loss.
• You have recurrent fainting spells or unexplained falls.

When should I seek immediate care?

• You have sudden shortness of breath.
• Your lips or nails turn blue.
• You faint or have an unexplained fall.

When should I contact my healthcare provider?

• You have a fever.
• You have chills, a cough, or feel weak and achy.
• You gain two to three pounds in a day or have new swelling in your ankles or legs.
• You have questions or concerns about your condition or care.