Congenital heart defects in children

Diagnosis

A congenital heart defect may be diagnosed during pregnancy or after birth. Signs of certain heart defects can be seen on a routine pregnancy ultrasound test (fetal ultrasound).

After a baby is born, a healthcare professional might think there's a congenital heart defect if the baby has:

• Growth delays.
• Color changes in the lips, tongues or nails.

The healthcare professional may hear a sound, called a murmur, while listening to the child's heart with a stethoscope. Most heart murmurs are innocent, meaning that there is no heart defect and the murmur isn't dangerous to your child's health. However, some murmurs may be caused by blood flow changes to and from the heart.

Tests

Tests to diagnose a congenital heart defect include:

• Pulse oximetry. A sensor placed on the fingertip records the amount of oxygen in the blood. Too little oxygen may be a sign of a heart or lung problem.
• Electrocardiogram (ECG or EKG). This quick test records the electrical activity of the heart. It shows how the heart is beating. Sticky patches with sensors, called electrodes, attach to the chest and sometimes the arms or legs. Wires connect the patches to a computer, which prints or displays results.
• Echocardiogram. Sound waves are used to create images of the heart in motion. An echocardiogram shows how blood moves through the heart and heart valves. If the test is done on a baby before birth, it's called a fetal echocardiogram.
• Chest X-ray. A chest X-ray shows the condition of the heart and lungs. It can show if the heart is enlarged, or if the lungs contain extra blood or other fluid. These could be signs of heart failure.
• Cardiac catheterization. In this test, a doctor inserts a thin, flexible tube called a catheter into a blood vessel, usually in the groin area, and guides it to the heart. This test can give detailed information on blood flow and how the heart works. Some heart treatments can be done during cardiac catheterization.
• Heart MRI. Also called a cardiac MRI, this test uses magnetic fields and radio waves to create detailed images of the heart. A cardiac MRI may be done to diagnose and evaluate congenital heart defects in adolescents and adults. A heart MRI creates 3D pictures of the heart, which allows for accurate measurement of the heart chambers.

Treatment

Treatment of congenital heart defects in children depends on the specific heart problem and how severe it is.

Some congenital heart defects don't have a long-term effect on a child's health. They may safely go untreated.

Other congenital heart defects, such as a small hole in the heart, may close as a child ages.

Serious congenital heart defects need treatment soon after they're found. Treatment may include:

• Medicines.
• Heart procedures.
• Heart surgery.
• Heart transplant.

Medications

Medicines may be used to treat symptoms or complications of a congenital heart defect. They may be used alone or with other treatments. Medicines for congenital heart defects include:

• Blood pressure drugs. Examples include angiotensin-converting enzyme (ACE) inhibitors, angiotensin 2 receptor blockers (ARBs) and beta blockers.
• Water pills, also called diuretics. This type of medicine helps remove fluid from the body. They help lower the strain on the heart.
• Heart rhythm drugs, called anti-arrhythmics. These medicines help control irregular heartbeats.

Surgery or other procedures

If your child has a severe congenital heart defect, a heart procedure or surgery may be recommended.

Heart procedures and surgeries done to treat congenital heart defects include:

• Cardiac catheterization. Some types of congenital heart defects in children can be repaired using thin, flexible tubes called catheters. Such treatments let doctors fix the heart without open-heart surgery. The doctor inserts a catheter through a blood vessel, usually in the groin, and guides it to the heart. Sometimes more than one catheter is used. Once in place, the doctor threads tiny tools through the catheter to fix the heart condition. For example, the surgeon may fix holes in the heart or areas of narrowing. Some catheter treatments have to be done in steps over a period of years.
• Heart surgery. A child may need open-heart surgery or minimally invasive heart surgery to repair a congenital heart defect. The type of heart surgery depends on the specific change in the heart.
• Heart transplant. If a serious congenital heart defect can't be fixed, a heart transplant may be needed.
• Fetal cardiac intervention. This is a type of treatment for a baby with a heart problem that's done before birth. It may be done to fix a serious congenital heart defect or prevent complications as the baby grows during pregnancy. Fetal cardiac intervention is rarely done and is only possible in very specific situations.

Some children born with a congenital heart defect need many procedures and surgeries throughout life. Lifelong follow-up care is important. The child needs regular health checkups by a doctor trained in heart diseases, called a cardiologist. Follow-up care may include blood and imaging tests to check for complications.

Lifestyle and home remedies

If your child has a congenital heart defect, lifestyle changes may be recommended to keep the heart healthy and prevent complications.

• Sports and activity restrictions. Some children with a congenital heart defect may need to reduce exercise or sports activities. However, many others with a congenital heart defect can participate in such activities. Your child's care professional can tell you which sports and types of exercise are safe for your child.
• Preventive antibiotics. Some congenital heart defects can increase the risk of infection in the lining of the heart or heart valves, called infective endocarditis. Antibiotics may be recommended before dental procedures to prevent infection, especially for people who have a mechanical heart valve. Ask your child's heart doctor if your child needs preventive antibiotics.

Coping and support

You may find that talking with other people who have been through the same situation brings you comfort and encouragement. Ask your healthcare team if there are any support groups in your area.

Living with a congenital heart defect may make some children feel stressed or anxious. Talking to a counselor may help you and your child learn new ways to manage stress and anxiety. Ask a healthcare professional for information about counselors in your area.

Preparing for your appointment

A life-threatening congenital heart defect is usually diagnosed soon after birth. Some may be discovered before birth during a pregnancy ultrasound.

If you think your child has symptoms of a heart condition, talk to your child's healthcare professional. Be prepared to describe your child's symptoms and provide a family medical history. Some congenital heart defects tend to be passed down through families. That means they are inherited.

What you can do

When you make the appointment, ask if there's anything your child needs to do in advance, such as avoiding food or drinks for a short period of time.

Make a list of:

• Your child's symptoms, if any. Include those that may seem unrelated to congenital heart defects. Also note when they started.
• Important personal information, including a family history of congenital heart defects.
• Any infections or health conditions the child's birth mother has or had and if alcohol was used during pregnancy.
• All medicines, vitamins or other supplements taken during pregnancy. Also include a list of medicines your child takes. Include those bought without a prescription. Also include the dosages.
• Questions to ask your healthcare team.

Preparing a list of questions can help you and your healthcare team make the most of your time together. If your child is diagnosed with a congenital heart defect, ask the specific name of the condition.

Questions to ask the healthcare professional might include:

• What tests does my child need? Do these tests need any special preparation?
• Does my child need treatment? If so, when?
• What is the best treatment?
• Is my child at risk of long-term complications?
• How can we watch for possible complications?
• If I have more children, how likely are they to have a congenital heart defect?
• Are there any brochures or other printed material that I can take home with me? What websites do you recommend visiting?

What to expect from your doctor

Your child's healthcare team may ask you many questions. Being ready to answer them may save time to go over any details you want to spend more time on. The healthcare team may ask:

• When did you first notice your child's symptoms?
• How would you describe your child's symptoms?
• When do these symptoms occur?
• Do the symptoms come and go, or does your child always have them?
• Do the symptoms seem to be getting worse?
• Does anything make your child's symptoms better?
• Do you have a family history of congenital heart defects or congenital heart disease?
• Has your child been growing and meeting developmental milestones as expected? (Ask your child's pediatrician if you're not sure.)