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Information from Your Family Doctor
Coping with Congenital Heart Disease in Your Baby
Am Fam Physician. 1999 Apr 1;59(7):1867-1868.See related article on congenital heart disease.
What is congenital heart disease?
A congenital heart disease is one that a baby is born with.
Did I do something during pregnancy that made my baby have this problem?
Probably not. Some things that happen in pregnancy can lead to a congenital heart problem in a baby, but often the reason for the heart disease is not known. Talk with your family doctor if you're worried that you caused your baby's heart problem, but don't blame yourself.
I felt depressed when I found out my baby has a heart problem. Is that normal?
Yes. Feeling angry, guilty or depressed is normal. Knowing that your baby has a heart problem is stressful. When you first found out about your baby's problem, you may have been in shock.
Should I be afraid to pick up my baby?
No, don't be afraid. Many parents are afraid to handle their sick baby because they fear that they'll hurt the baby. But you won't hurt your baby by holding him or her. Your baby needs your love and attention. Play with your baby, talk to your baby. These things are important for both of you. In many ways, your baby has the same needs all babies have to be loved and cared for.
Why is it harder for my baby to feed?
Babies with heart disease may get tired easily while they're feeding. If feeding makes your baby tired, try giving smaller amounts of milk at one time. It may help to feed the baby more often. Your baby may also need more food because a heart defect makes the heart work a lot harder. The extra work of your baby's heart makes your baby burn more calories—just like you burn more calories when you exercise. For this reason, your baby may need more food to grow.
Can I breast feed my baby?
Yes. Breast feeding a baby with a heart disease can be harder because the baby gets tired so quickly. But breast milk is the best food for your baby. It helps protect your baby from infections. An infection could make your baby's heart problem worse. You may need to give your baby formula too, to get enough calories.
If you're having trouble breast feeding, talk with your doctor. Your doctor may suggest that you see a lactation specialist.
What about formula?
If you feed your baby formula all the time or use it with breast milk, you may need to use a special formula with extra calories so your baby can gain weight. A pediatric nutritionist or dietitian can help you choose a good formula.
Will my baby develop normally?
Your baby's growth may be slower because of the heart problem, but there's a good chance that your baby will sit up, crawl, walk and talk at about the same time other children do. After the heart problem is fixed, chances are good that your baby will grow up to be strong and healthy.
What about tests?
Several tests can show what kind of heart disease your baby has. They can also check on your baby's condition, to see how the heart is working. Here are some tests your baby might have:
ECG (short for “electrocardiogram”)—An ECG is a drawing of the baby's heart beat. It shows how well the heart is working.
Pulse oximetry—This test 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 puts dye in the heart to give the doctor a clear picture of the heart problem.
What treatment will my baby need for the heart problem?
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. Try not to skip a dose. If you do forget a dose, call your doctor to find out if you should give an extra dose.
What about surgery? Do all babies need surgery?
Surgery depends on the type of heart problem your baby has. 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 stay in an intensive care unit for a few days so the doctors and nurses can keep a close watch. Tubes and machines keep track of your child's condition. They don't cause any pain. Many children are back at play just a few days after heart surgery.
Where can I go for help?
Support is very important. Parental support groups let you talk with other parents who are going through the same thing. You can talk about your fears and share what you know. This can be very reassuring.
Talk with your doctor or a hospital social worker to find out about respite care, day care programs and homemaker services. A counselor may also give you ways to cope with a sick baby.
This handout is provided to you by your family doctor and the American Academy of Family Physicians. Other health-related information is available from the AAFP online at http://familydoctor.org.
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.
Copyright © 1999 by the American Academy of Family Physicians.
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