What is congenital heart disease?

Congenital Heart Disease

Congenital heart disease in children: Overview

Congenital heart disease refers to heart problems a baby is born with. There are different types of problems. The heart may have a hole between two of its chambers. Blood may not flow the right way because of a problem with a blood vessel. Sometimes, a heart valve may not form correctly. Or, a heart valve or a chamber may not have formed at all.

These heart problems are usually diagnosed at or before birth. But some cases of mild heart problems are diagnosed when a child is older.

It can be scary and stressful to know that your child has a heart problem. But a procedure or surgery can repair many of these problems. Sometimes, a problem gets better on its own as a baby grows. If a problem is very serious, a child could have surgery soon after diagnosis. In deciding about treatment, your doctor will look at your child's age and size, the type of problem your child has, and their overall health.

Congenital heart disease

Congenital heart disease refers to structural heart problems or abnormalities that have been present since birth.

These problems usually have no known cause. In some cases, they may be passed from a parent to a child (inherited). They also may occur in the developing baby (fetus) of a person who has an infection or who is exposed to radiation or other toxic substances during pregnancy.

Having congenital heart disease may raise the risk for complications, such as heart failure, endocarditis, atrial fibrillation, and heart valve problems.

Some types of congenital heart disease are diagnosed before or shortly after birth. Others may not be found for years. Some problems are severe enough to cause death. Some resolve on their own and may not need any treatment. Babies with large or complex problems usually require surgery. Most children with congenital heart disease grow up and live healthy lives. They need lifelong monitoring of their condition.

What happens when a child has congenital heart disease?

Congenital heart disease includes many types of problems. They may cause changes with blood flow through the heart. Most problems need treatment, but some get better on their own. Some problems aren't found until the teen years or later. Most children and adults live full and healthy lives.

What are the symptoms of congenital heart disease in children?

Symptoms of congenital heart disease will depend on what problem your baby has. Your baby may have symptoms such as tiring quickly, sweating easily, or having trouble breathing. Or your baby may not have symptoms at birth but may have them later.

How is congenital heart disease treated in children?

Your child's treatment will depend on the type of congenital heart disease. Some problems get better on their own and may not need treatment. Medicine may be used to treat a problem or prevent complications. Some problems are repaired using a thin tube called a catheter. More complex problems may need surgery.

Congenital heart defect: What happens when your child is in the hospital?

While your child is in the hospital for surgery, treatment may involve:

  • Receiving intravenous (IV) fluids until your child wakes up after surgery and can eat.
  • Having oxygen levels in the blood measured with a pulse oximeter.
  • Making adjustments to help make breathing easier. The head of your child's bed or crib may be raised. Your child may be given oxygen (through a hood, tent, or face mask). Some children are treated with a breathing machine called a ventilator.
  • Draining fluids from the chest after surgery. Pressures within the body also may be measured.

Many parents are frightened and worried about their child being in the hospital. Ask questions about any procedures that you don't understand or any special care that is needed. In general, try to be with your child as much as you can.

How is congenital heart disease diagnosed in children?

Congenital heart disease in children may be found before or after birth. A fetal echocardiogram may be used to diagnose a problem before birth. After a doctor suspects a heart problem, your baby will probably need several tests. These include a chest X-ray, an echocardiogram, and possibly a cardiac catheterization.

How are medicines used to treat congenital heart disease in children?

Medicines may be used to treat congenital heart disease until the problem can be repaired. Some children and adults need to take medicine even after the problem is repaired. Children with certain types of congenital heart disease that can't be completely repaired may have to take medicines for a long time.

Treatment with medicines depends on the:

  • Type of problem. Complex cyanotic congenital heart disease usually needs treatment with medicines more often than acyanotic congenital heart disease.
  • Size of the problem. Children with large or complex problems may need medicines to help with their symptoms.

Medicines may be used to:

  • Treat problems and relieve symptoms. These medicines include diuretics, digoxin, vasodilators, and antiarrhythmics.
  • Treat certain problems. These medicines include prostaglandins and prostaglandin inhibitors.
  • Prevent other problems. Examples are blood thinners and antibiotics. Making sure your child gets all the recommended vaccines will help keep your child healthy.

Who can diagnose and treat congenital heart defects?

The following health professionals can evaluate symptoms of a congenital heart defect:

  • Pediatrician
  • Pediatric cardiologist
  • Family medicine physician
  • Internist (for adults with possible congenital heart disease)
  • Physician assistant
  • Nurse practitioner

How can you care for your child who has congenital heart disease?

Ways that you can help your child include:

  • Working with a registered dietitian if your child has trouble eating. Some children may have a hard time eating and getting enough calories.
  • Giving medicines. Be sure you know how to give your child's medicines safely.
  • Preventing infections. Your child may need antibiotics before certain dental procedures. Make sure that your child gets the recommended childhood vaccines.
  • Caring for a child in the hospital. Take some of your child's familiar things to the hospital, such as favorite toys or blankets.
  • Helping your child be active. Most children can exercise without limitations. Your child's doctor will let you know if your child needs to avoid certain types of activities.
  • If your child needs oxygen, learning when and how to give your child oxygen.
  • Caring for yourself. Taking good care of your own health will help you take care of your child.

How are procedures or surgery used to treat congenital heart disease in children?

Surgery and catheterizations are used to repair many types of congenital heart disease.

The kind of surgery will depend on what type of problem the child has. Surgery may:

  • Close holes or blood vessels that have either formed or not closed.
  • Make arteries wider.
  • Repair or replace valves that are too tight or that leak too much.
  • Return the aorta or pulmonary arteries to the right position.

In rare cases, a heart transplant may be needed.

With catheterization, a doctor threads a thin, flexible tube called a catheter through a blood vessel into the heart. The doctor can check the heart and treat a problem.

Congenital heart disease: How can you help your child live well as they grow up?

As your child grows, you can help them lead an active, healthy, happy, and fulfilling life.

Most children and teens deal well with having congenital heart disease. But if you are worried about your child's emotional well-being, ask your child's care team for help.

As children get older, you can gradually teach them about their heart problem and how to care for their own health. You and your child's doctor can teach self-care skills to your child. These skills may include taking medicines and exercising safely. A heart-healthy lifestyle is also very important. It involves eating healthy foods, being active, staying at a healthy weight, and not smoking.

You can help your teen reach their educational and career goals. If your teen's heart problem might place restrictions on employment, then vocational counseling and employment advice may be helpful for planning a career. Talk with a health professional or the school counselor for information.

You can also teach your teen or young adult how to work with the healthcare system. For example, you can teach them how to make and prepare for doctor appointments. And you can help them get health insurance and know how to use it. If you need help with insurance, ask your doctor for a referral to a social worker or financial counselor.

When your child is an adult, they will need routine checkups. Be sure that your child has a primary care physician. Your child might also need to see a cardiologist regularly, such as once a year.

What increases the risk for congenital heart disease?

In most cases, the cause of congenital heart disease isn't known. But certain things increase the chance of having congenital heart disease. These include:

  • Family history. A child's risk for having a congenital heart problem increases if a brother, sister, or parent has one.
  • Other genetic conditions. For example, Down syndrome has been linked to these problems.
  • Premature birth. Babies born too early have a higher chance of having congenital heart disease.
  • Chronic conditions during pregnancy. Babies born to people with diabetes or phenylketonuria have a higher chance of having a heart problem.
  • Use of alcohol or drugs during the pregnancy.

Caring for yourself when your child has congenital heart disease

Caring for a child with congenital heart disease can have a strong impact on your life as a parent. It's common to worry about the effect the condition will have on your child.

Try these tips to take good care of your own physical and emotional health. Doing so can help give you more energy to care for your child.

  • Learn all you can about your child's heart disease.
  • Don't blame yourself.

    You didn't cause the heart problem. Many things occurred for the problem to happen. No single factor causes congenital heart disease.

  • Allow yourself to grieve about your child.

    It's okay to feel sad. You may grieve because your baby isn't the perfectly healthy infant you imagined. If you or a family member continues to feel extremely sad, guilty, or depressed or is otherwise having trouble dealing with your child's heart disease, talk with a doctor.

  • Ask questions.

    Don't expect to remember everything that's involved in caring for your child. Ask questions when you don't understand. Ask your doctor for written directions on caring for your child. If directions are written, you can look at them later and call the doctor if you have questions.

  • Join a support group.

    It's helpful to be in contact with organizations and people who can offer support and answer your questions. Talk with your health professional to see if there is a support group you might join. It's a good way to meet other parents who are dealing with similar issues.

  • Talk to a counselor.

    A counselor can help you with your feelings. Get your entire family involved if you feel that you or your family needs help.

  • Ask for help with health insurance, and get financial help if needed.

    Talk with your doctor about a referral to a social worker or financial counselor who can help you.

What other health problems can happen with congenital heart disease?

Most children and adults with congenital heart disease lead healthy lives. But the treatments they've had or the heart problem itself can cause or be related to long-term problems. These include:

  • Developmental delays or disabilities or behavior problems.
  • Certain physical traits, such as smaller-than-average adult height and weight, clubbing, or cyanosis (bluish tint to the skin, lips, or nails from low blood-oxygen levels).
  • Other heart problems, such as heart failure.
  • Health problems in adults, such as lung or kidney disease.

What is congenital heart disease?

Congenital heart disease refers to problems with how a baby's heart forms. "Congenital" means that the heart problem has been present since birth.

There are many different types of congenital heart problems. They can be fairly simple, such as a hole between the chambers of the heart or a heart valve that has not formed right. Others are more serious and complex, such as a missing heart valve or heart chamber.

Most problems affect how blood flows through the heart or through the blood vessels near the heart. Some problems may cause blood to flow in a pattern that isn't normal. Others can completely or partially block blood flow.

Some problems are discovered in the fetus during pregnancy. Others aren't found until birth. Still others may not be discovered until a child gets older or even until a child is an adult.

What causes congenital heart disease?

In most cases, the cause of congenital heart disease isn't known. But genes passed down from a parent are a possible cause. Viral infections also may play a role. Taking some prescription or other medicines during pregnancy may cause congenital heart disease.

How can you prevent heart infection in a child with congenital heart disease?

Congenital heart disease can raise the risk of an infection in the heart (endocarditis). To help prevent this infection, your child needs to take excellent care of their teeth throughout life. Good oral care can limit the growth of mouth bacteria that could get into the bloodstream and lead to infection.

Some children take antibiotics before they have certain dental or surgical procedures that could put bacteria or fungi into the blood. The antibiotics lower the risk of getting endocarditis.

Congenital heart disease in children: When to call

Call 911 anytime you think your child may need emergency care. For example, call if:

  • Your child passes out (loses consciousness).
  • Your child has severe trouble breathing. Signs may include:
    • Your child turns blue.
    • Your child stops breathing.

Call your doctor now or seek immediate medical care if:

  • Your child has difficulty breathing.
  • Your child has difficulty feeding.
  • Your child has a fever.
  • There is a blue tint to your child's skin, lips, or fingernails.
  • Your child has swelling in the belly, legs, ankles, or feet.

Watch closely for changes in your child's health, and be sure to contact your doctor if:

  • Your child is not gaining weight.
  • Your child has less energy or is sleeping more than usual.

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