Congenital heart defects are problems with how a baby's heart forms. “Congenital” means that the heart problem develops before the baby is born or at birth.
Most congenital heart defects affect how blood flows through the heart or through the blood vessels near the heart. Some defects may cause blood to flow in a pattern that is not normal. Others can completely or partially block blood flow.
There are many different types of congenital heart defects. 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.
Some defects are discovered in the fetus (baby) while a woman is pregnant. Others are not found until birth. Still others may not be discovered until your child gets older or even until he or she becomes an adult.
No matter when a heart defect is discovered, having a child with a heart problem is very stressful. Dealing with the fear and uncertainty may seem overwhelming, especially when you have a fragile newborn. It may help you to learn as much as you can about your child's treatment and to talk to your doctor and other parents who have a child with similar problems.
No one knows exactly what causes most congenital heart defects. Genes passed down from a parent are a possible cause. Viral infections also may play a role. For example, if a woman gets German measles (rubella) while she is pregnant, it may cause problems with how her baby's heart develops. Women who have diabetes have a greater chance of having a child with a congenital heart defect.
Congenital heart defects are more common in babies who are born with genetic conditions such as Down syndrome.
Taking some prescription or other medicines during pregnancy may cause congenital heart defects. Women who use illegal "street" drugs or who drink alcohol during pregnancy have a higher risk of having a baby with a congenital heart defect.
Symptoms of congenital heart defects will depend on what problem your baby has. Babies with congenital heart defects may have one or more of these symptoms:
In some cases, your child's congenital heart defect may be so mild that symptoms will not appear until the child is a teenager or young adult.
In most cases, congenital heart defects are found at birth or during a baby's first few months.
You may find that your baby has trouble eating or is not gaining weight. Or your doctor may hear abnormal sounds or murmurs in your baby's heart during a routine checkup. The first sign may be a bluish tint to the baby's skin.
After a doctor suspects a heart defect, your baby will probably need several tests, such as blood tests, an echocardiogram, and possibly a heart catheterization. The doctor may use the echocardiogram to check blood flow through your baby's heart and to look at the valves, thickness, and shape of the heart. A heart catheterization measures blood pressure in the heart and heart arteries and can show how well the heart is pumping.
Having your child go through this testing can be very scary. Do not be afraid to ask as many questions as you need to ask to feel comfortable. Talk to your doctor and the nurses. And talk to the people who are doing the testing.
Some defects get better on their own and may not need treatment. Your baby's or child's treatment will depend on the type of defect.
Medicines may be used to help the heart work better. Medicines may also treat symptoms until the defect is repaired.
Some defects can be fixed by using a catheter, which does not require opening up the chest. A doctor threads a thin tube called a catheter through a blood vessel, typically one in the groin. The doctor threads the catheter through to the heart. There, he or she uses it to close holes or open narrowed blood vessels or valves.
If a baby has a large or complex defect, the baby may need one or more open-heart surgeries. The surgery may be done right away, done over several steps, or delayed until the baby is stronger. Sometimes surgery is delayed if the baby is premature or until the baby is strong enough to handle the surgery. In some cases, the child may need different types of surgery over time as he or she grows.
In rare cases, a heart defect may be so serious that a heart transplant is needed.
Frequently Asked Questions
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The exact cause of most congenital heart defects is not known. But doctors do know that certain things increase the risk that a baby will have a heart defect.
Congenital heart defects cause a wide range of symptoms. Your baby may have only mild symptoms and tire easily, for example. He or she may have life-threatening symptoms, such as severe difficulty breathing. Or your baby may not have any symptoms that you notice at birth but may have them later as he or she grows.
Common symptoms of a congenital heart defect include:
Blood flow problems caused by heart defects can mean that your baby gets less oxygen. This happens mostly in children who have cyanotic heart defects ("blue babies"). Cyanotic heart defects are abnormal openings between the heart chambers that allow oxygen-poor blood from the right side of the heart to mix with oxygen-rich blood from the left side of the heart. Other types of defects (acyanotic heart defects) make the heart work extra hard. Acyanotic heart defects do not cause cyanosis, because they typically do not interfere with the amount of oxygen or blood that reaches the body's tissues.
If a baby has trouble getting oxygen or the heart is working extra hard, symptoms include:
Symptoms usually go away after the defect is corrected. A congenital heart defect that is repaired at the right time is less likely to permanently affect your child's growth and development.
Congenital heart defects happen when the heart does not form normally as the baby (fetus) grows in the uterus. Heart defects may cause problems with blood flow through the heart after a baby is born. The problems can affect the baby's blood and oxygen supply.
If the problems are not treated, the baby could develop heart failure or other complications. Abnormally shaped heart valves, in particular, can lead to complications such as endocarditis or narrowed or leaky heart valves.
Newborns with serious life-threatening defects usually need immediate surgery. Medicines are sometimes used while waiting to see whether a mild defect heals on its own or until a child is strong enough to have heart catheterization or surgery. Some children may die even if they have early treatment.
Congenital heart defects may not be found until the teenage years or later. Some defects get better on their own and do not require treatment.
Although many children and adults with corrected heart defects lead normal lives, heart defects can be related to or cause long-term risks that may include:
If you are an adult with a congenital heart defect, you may have to make decisions about:
In most cases, the cause of a congenital heart defect is not known. But certain things increase your baby's chances of developing a heart defect.
Women who plan to become pregnant and women who are pregnant can lower their risk of having a baby with a congenital heart defect by taking steps to have a healthy pregnancy. For healthy pregnancy choices, see the topic Pregnancy.
Call 911 or other emergency services immediately if your child has severe difficulty breathing, faints, or has seizures.
Call your doctor immediately if your child with a congenital heart defect has:
Talk to your doctor if your child with a congenital heart defect has:
Watchful waiting, which is a wait-and-see approach, is not appropriate if:
The following health professionals can evaluate symptoms of a congenital heart defect:
To prepare for your appointment, see the topic Making the Most of Your Appointment.
Testing for congenital heart defects can be done while a woman is pregnant or after a baby's birth.
A fetal echocardiogram, which can be done as early as 16 weeks of pregnancy, is the best test before a baby's birth. The test uses sound waves to take pictures of the fetal heart. The fetal echocardiogram may be done if:
Many congenital heart defects are found in the first month after a baby is born. To diagnose a heart defect, a doctor will ask questions about the baby's symptoms, appetite, and other habits and give the baby a physical exam. An echocardiogram and possibly a heart catheterization (angiogram) may be needed.
More tests may be needed, depending on the symptoms and type of defect. These may include:
In families with a history of congenital heart defects, genetic testing may be done.
A baby may be checked for congenital heart defects if:
Your child's treatment for a congenital heart defect will be based on the type of problem he or she has. Your child's age, size, and general health also are important.
Treatment helps most children live fairly normal lives. Your child may need:
If your child has a mild heart defect, a doctor may want to see if the defect gets better on its own. Your child may need some medicines during this time to help his or her heart work better. A prostaglandin inhibitor medicine may be given to a premature baby to help close a patent ductus arteriosus.
Heart catheterization may be done to partially or completely repair a defect. More severe defects require surgery.
If a newborn needs surgery, the surgery may be delayed until the baby is stronger. If the defect threatens the baby's life, surgery will be done right away.
Medicines may be given in a vein for severe defects such as coarctation of the aorta, transposition of the great vessels, or tetralogy of Fallot.
Medicine, heart catheterization, or surgery may also be used as initial treatment for a mild congenital heart defect that is not noticed until later in childhood, adolescence, or early adulthood.
If your child needs surgery, your doctor may want to wait until your child is about 2 to 4 years old. Meanwhile, caring for your child who has a heart problem can be hard. You may need to keep track of medicines and make frequent trips to the doctor. Costs can be high. And you may feel guilty, as if something you did caused the child to have a heart defect. The defect is not your fault. Try to find support groups and other parents who can help you with the many emotions involved.
Until your child can have surgery, you may need to focus on:
Some congenital heart defects can be completely repaired with one surgery. More complex defects often require several surgeries over the years. Knowing what to expect in the hospital can help you plan ahead. For example, you can think about what kinds of items to bring and how you will want to record instructions from the health professionals in the hospital.
If your child is older, talking to him or her about what to expect may be helpful.
With most congenital heart defects, your child's heart will not be completely normal even after surgery. Medicines and trips to the cardiologist may be needed throughout life.
It can be hard to accept that your child has a heart defect. And it is normal to worry about his or her future. Make sure you take time to adjust to these challenges.
Adults who have congenital heart defects also need routine checkups. You also may need to be careful when you exercise or avoid exercise altogether.
If your child has a severe congenital heart defect or has complications, more treatment is needed.
Medicines often are used for young children who have large defects and heart failure.
At this stage, medicines are used to help the heart work better:
Additional heart catheterization procedures or surgeries are sometimes needed to further correct the defect, either fully or partially.
Some people die from severe congenital heart defects or related complications, such as heart failure.
If your baby is born with a severe heart defect, be assured that there is a good chance that he or she will survive with treatment. But you must also prepare for the possibility that your child may die. Talk with your doctor about local resources and organizations that can help you manage your emotional and practical struggles when faced with this possibility. It may help to talk with other parents who have had children with congenital heart disease. For more information on these resources, see the Other Places to Get Help section of this topic.
Congenital heart defects generally cannot be prevented. But before and during pregnancy you can lower your risk of having a baby with heart defects.
Women who plan to become pregnant and women who are pregnant can lower their risk of having a baby with a congenital heart defect by taking steps to have a healthy pregnancy. For healthy pregnancy choices, see the topic Pregnancy.
If you are thinking of becoming pregnant and you or your partner has a congenital heart defect, ask your doctor about genetic counseling. This may help you find out if you have an increased chance of having a child with a heart defect. A woman who has a congenital heart defect should try to find out if becoming pregnant will increase her risk of health problems.
If you are pregnant and someone else in your family has or had a congenital heart defect, talk with your doctor about tests that can tell whether your baby (fetus) has a heart defect. Some heart defects can be found before the baby is born, and treatment can begin early.
Congenital heart defects often are repaired with surgery or heart catheterization, but home treatment also plays an important role.
Home treatment may include caring for a child who has cyanosis, or problems getting enough oxygen. Children with cyanosis may have a bluish tint to the skin. If your child has "blue spells":
Nutrition is very important for children who have congenital heart defects. Getting your child to eat right can be a challenge. Children with congenital heart defects often tire when eating, so they eat less and may not get enough calories. Feeding may take longer than you expect.
To help overcome feeding difficulties or lack of weight gain:
Medicines to treat congenital heart defects are very strong and can be dangerous if they are not given correctly. Be sure you know how to give your child's medicine safely.
If you are not comfortable giving medicine to your child, ask your doctor the following questions:
If you need to give more than one medicine, ask your doctor about having a home health nurse visit you. The nurse can set up a schedule for the medicines, show you how to store them, and help you become more comfortable giving them.
Take care of yourself and your family as you learn to deal with a lifelong condition. You can:
Expenses can quickly multiply if your child's heart defect requires several hospital stays and tests. You may qualify for help from organizations such as the Crippled Children's Services or Medicaid. Talk with your doctor about a referral to a social worker or financial counselor who can help you.
Adults with congenital heart defects often have many issues to think about, including:
Adults and teens with congenital heart defects may have self-esteem issues because of how they look. They may have scars from repeated surgeries, be smaller, have clubbing, or have limits on how active they can be.
Children may feel alone and have trouble coping because they have to stay in the hospital often. Most children deal well with having a heart defect. But some children with serious heart defects may have a hard time feeling "normal."
Medicines often are needed to treat congenital heart defects until the defect can be repaired or corrected. Some complex acyanotic heart defects and many cyanotic heart defects require ongoing treatment with medicines even after the defect is repaired. Children with certain defects that cannot be completely corrected may have to take medicines for a long time.
Medicines typically are used to:
Medicines used to improve blood flow and help manage symptoms related to heart failure include:
Other medicines may include:
Treatment with medicines varies depending on the:
Medicines used to treat congenital heart defects are very strong and can be dangerous if they are not given correctly. It is important to know how to give medicine to your child safely. For example, you should be confident with knowing how much medicine your child needs and how and when to give it.
If your child has a large or complex congenital heart defect, he or she may need open-heart surgery. The kind of surgery will depend on what defect the child has. In general, the types of surgery are:
In rare cases, a heart transplant may be needed.
Be prepared for what to expect in the hospital. It may be shocking to see your newborn or child hooked up to so many machines and tubes. For example, your child will likely get medicines and fluids through an intravenous (IV) catheter. He or she may be on oxygen or a ventilator. Your child may have drains in the chest to remove fluids after surgery.
If your child is older, you can help your child feel more comfortable and secure by preparing him or her for what to expect, asking questions, and letting him or her talk to the doctor too.
The type of surgery is determined by the defect and the surgeon's preference. Surgery is done for more complex defects or when catheterization cannot correct the defect.
Some congenital heart defects can be completely repaired with one surgery. Some of the more complex heart defects require several surgeries over several years.
Even after surgery, your child may still have symptoms such as weakness and a bluish tint (cyanosis) to the skin, lips, and nail beds. Your doctor may recommend limiting exercise or sports as your child gets older.
Heart catheterization may be used to correct certain congenital heart defects. Children typically recover more quickly from a heart catheterization procedure than from a surgery.
Additional treatment for a child with a congenital heart defect may involve counseling in nutrition, employment, or family issues in addition to medicines and surgery.
| American Heart Association (AHA) | |
| 7272 Greenville Avenue | |
| Dallas, TX 75231 | |
| Phone: | 1-800-AHA-USA1 (1-800-242-8721) |
| Web Address: | www.heart.org |
Visit the American Heart Association (AHA) website for information on physical activity, diet, and various heart-related conditions. You can search for information on heart disease and stroke, share information with friends and family, and use tools to help you make heart-healthy goals and plans. Contact the AHA to find your nearest local or state AHA group. The AHA provides brochures and information about support groups and community programs, including Mended Hearts, a nationwide organization whose members visit people with heart problems and provide information and support. | |
| KidsHealth for Parents, Children, and Teens | |
| 10140 Centurion Parkway North | |
| Jacksonville, FL 32256 | |
| Phone: | (904) 697-4100 |
| Fax: | (904) 697-4125 |
| Web Address: | www.kidshealth.org |
This Web site is sponsored by the Nemours Foundation. It has a wide range of information about children's health, from allergies and diseases to normal growth and development (birth to adolescence). This Web site offers separate areas for kids, teens, and parents, each providing age-appropriate information that the child or parent can understand. You can sign up to get weekly e-mails about your area of interest. | |
| March of Dimes | |
| 1275 Mamaroneck Avenue | |
| White Plains, NY 10605 | |
| Phone: | (914) 997-4488 |
| Web Address: | www.marchofdimes.com |
The March of Dimes tries to improve the health of babies by preventing birth defects, premature birth, and early death. March of Dimes supports research, community services, education, and advocacy to save babies' lives. The organization's website has information on premature birth, birth defects, birth defects testing, pregnancy, and prenatal care. | |
| National Heart, Lung, and Blood Institute (NHLBI) | |
| P.O. Box 30105 | |
| Bethesda, MD 20824-0105 | |
| Phone: | (301) 592-8573 |
| Fax: | (240) 629-3246 |
| TDD: | (240) 629-3255 |
| Email: | nhlbiinfo@nhlbi.nih.gov |
| Web Address: | www.nhlbi.nih.gov |
The U.S. National Heart, Lung, and Blood Institute (NHLBI) information center offers information and publications about preventing and treating:
| |
Other Works Consulted
- Allen HD, et al. (1998). Pediatric therapeutic cardiac catheterization: A statement for healthcare professionals from the Council on Cardiovascular Disease in the Young. American Heart Association. Circulation, 97(6): 609–625.
- Brickner ME (2007). Congenital heart disease. In EJ Topol, ed., Textbook of Cardiovascular Medicine, 3rd ed., pp. 502–536. Philadelphia: Lippincott Williams and Wilkins.
- Driscoll DD, et al. (1994). Guidelines for evaluation and management of common congenital cardiac problems in infants, children, and adolescents. Circulation, 90(4): 2180–2188.
- Warnes CA, et al. (2008). ACC/AHA 2008 Guidelines for the management of adults with congenital heart disease: Executive summary: A report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines. Circulation, 118(23): 2395–2451.
- Webb GD, et al. (2004). Congenital heart disease. In DP Zipes et al., eds., Braunwald's Heart Disease, 7th ed., pp. 1489–1552. Philadelphia: Elsevier Saunders.
| By | Healthwise Staff |
|---|---|
| Primary Medical Reviewer | John Pope, MD - Pediatrics |
| Specialist Medical Reviewer | Larry A. Latson, MD - Pediatric Cardiology |
| Last Revised | November 20, 2009 |
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Author: Healthwise Staff
Medical Review: John Pope, MD - Pediatrics & Larry A. Latson, MD - Pediatric Cardiology
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