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Congenital heart disease is a problem with the heart that is present at birth. “Congenital” is another way of saying your baby was born with it. “Congenital heart defect” is another term for congenital heart disease. It means that the heart developed with some kind of flaw or weakness as it developed. The condition can be fatal.
Congenital heart problems are the most common kind of birth defect. They can be simple or complex. They could include:
- heart valve defects
- a hole in the heart
- defects in one of the chambers
- heart muscle abnormalities.
The symptoms and the treatment depend on the type of problem. Some heart problems cause symptoms right away. Others cause symptoms when the child gets older. Sometimes there are never any symptoms. Many babies who have a congenital heart defect grow up to be healthy and strong.
Symptoms of congenital heart disease
The symptoms depend on the type of heart problem. Many people have no symptoms.
Serious congenital heart problems may cause the following symptoms in newborns:
- fast breathing
- a blue color to the skin, lips, and fingernails
- fatigue or poor feeding
- heart murmur (an extra sound, heard when a doctor listens to the heart).
In older children or adults, congenital heart problems may cause symptoms such as:
- heart murmur
- shortness of breath
- fatigue during exercise.
What causes congenital heart disease?
Doctors don’t always know what caused a congenital heart defect. Some risk factors for congenital heart defects include:
- Family history. The risk is higher if a parent or sibling has a congenital heart problem.
- Genetic disorder. Certain genetic disorders, such as Down syndrome, increase the risk of congenital heart problems.
- Infection. Certain infections during pregnancy, such as rubella, may increase your baby’s risk of having heart problems.
Some medicines, chemicals, and alcohol have been found to contribute to heart problems. Heart problems have also been found in the babies of women with diabetes who don’t control their blood sugar during pregnancy.
How is congenital heart disease diagnosed?
Severe heart problems usually are diagnosed during pregnancy. This can be during an ultrasound test or right after the baby is born. Less severe heart problems may not be found until the child is older or even in adulthood.
Several tests can show what kind of heart disease your baby has. Tests can also help your doctor see how well the heart is working. Not all babies need these tests. A doctor will order tests if he or she suspects a congenital heart defect or if your baby has a high risk factor. Here are some tests your baby might have:
- ECG or EKG (electrocardiogram). An ECG shows the heartbeat as a line tracing. It measures electrical activity in the heart.
- Pulse oximetry. This shows how much oxygen is in the baby’s blood.
- Echocardiogram. This test gives the doctor an ultrasound picture of the baby’s heart.
- Chest X-ray. This can show how well the heart is growing and if your baby’s lungs have fluid in them.
- Cardiac catheterization. This test uses dye in the heart to give the doctor a clear picture of the heart problem.
- Cardiovascular MRI. This imaging is becoming more popular as a way to look at heart defects in adolescents and adults. It produces better pictures than other methods.
Can congenital heart disease be prevented or avoided?
In many cases, there is nothing you can do to prevent congenital heart disease. But there are steps you can take to protect yourself and your baby.
- Tell your doctor you are pregnant before taking any medicines.
- Ask your doctor what types of chemicals or substances could be harmful to your baby.
- If you have diabetes or gestational diabetes, get your blood sugar under control.
- Get a blood test early in your pregnancy to see if you are immune to rubella. If you’re not, get vaccinated right after delivery.
Congenital heart disease treatment
Treatment depends on the heart problem and how severe it is. Some people don’t need any treatment. Other heart problems need treatment with medicine, procedures, or surgery. Your doctor will talk to you about your treatment options, or the treatment options for your child.
Many babies with heart disease need medicine to make their heart stronger or to prevent other problems. It’s very important to give the medicine just the way your doctor tells you to.
Some babies need to have surgery. Some heart problems have to be fixed as soon as the baby is born. Other problems can wait until the child is older. Sometimes the repair takes more than one operation. After surgery, your baby will probably stay in a neonatal intensive care unit (NICU) for a few days. There the doctors and nurses can keep a close watch. Many children are back to normal just a few days after heart surgery.
Living with congenital heart disease
Babies with heart disease may get tired easily while they’re feeding. Try giving smaller amounts of milk at one time. Then feed the baby more often. Your baby may need more food because a heart defect makes the heart work harder. This makes your baby burn more calories — just like you burn more calories when you exercise.
Can congenital heart disease cause other problems?
Some people who have congenital heart problems are at a higher risk for other heart problems, including:
- Endocarditis – an infection of the heart valves or the lining of the heart chambers.
- Pulmonary hypertension – an increase in the blood pressure going to the lungs.
- Arrhythmia – a heartbeat that is too fast or too slow, or skips a beat.
- Congestive heart failure – a heart that doesn’t pump blood as well as it should. This causes fluid to build up in the lungs or body.
Even if the problem is fixed, your child will need to be monitored for heart problems for the rest of their life.
Coping with your child’s heart problem
Caring for a baby or child with a heart problem can emotional and stressful. You need all of the information and support you can get. Connect with parents of other children with a heart problem. They can share coping skills and can understand what you’re going through. Also talk to a counselor if you’re having trouble coping. They can help you reduce stress, anxiety, and depression.
Questions to ask your doctor
- What is the likely cause of my child’s heart problem?
- What kind of heart problem does my child have?
- What kind of treatment does he/she need? Medicine? Surgery?
- What are the risks associated with the treatment?
- What is the recovery time for this treatment?
- What are some signs that my child’s condition is getting worse?
- Is my child at risk for any long-term health problems?
Copyright © American Academy of Family Physicians
This information provides a general overview and may not apply to everyone. Talk to your family doctor to find out if this information applies to you and to get more information on this subject.