Congenital Heart Disease: How to Care for Your Baby and Yourself

If your baby was born with a congenital heart defect, you probably have a lot of feelings about the situation. It is normal to feel angry, guilty, sad, or depressed. Knowing that your baby has a heart problem is stressful. When you first found out about your baby’s problem, you may have suffered shock.

You may have many questions about how to care for your baby. In many ways, you will care for your baby the same as if he or she were born without a heart defect. But there are a few things to pay special attention to, including your own health.

Path to improved health

Is it okay to pick up my baby?

Yes. Don’t be afraid to pick up or hold your baby. 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. Your baby needs to be loved and cared for just like any other baby.

Why is it harder for my baby to feed?

Babies who have heart disease may get tired easily while they’re feeding. If feeding makes your baby tired, try giving smaller amounts of breast milk or formula at a time. Then feed the baby more often. Burp your baby often, too. Babies who have trouble feeding tend to take in a lot of air. This can make them feel full before they’ve taken in enough milk or formula.

Don’t wait until your baby cries to feed him or her. Crying can tire them out, and they won’t have enough energy left to eat well. Look for cues that they are hungry. These could include making sucking motions, sucking on a fist, or fidgeting around.

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. For this reason, your baby may need more food to grow.

Can I breastfeed my baby?

Yes. Breastfeeding a baby who has heart disease can be more challenging 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, so he or she can get enough calories.

If you’re having trouble breastfeeding, talk with your doctor. Your doctor may suggest that you see a lactation specialist.

What about formula?

If you decide to use formula, you may need to use a special kind that has extra calories. This can help your baby gain weight. A pediatric nutritionist, dietician, or your family doctor can help you choose a good formula.

Does my baby have a greater chance of getting sick?

Yes. Babies with heart defects often have weaker immune systems. It can be harder for them to fight off infections. When they do get an infection, they could get so sick they have to go to the hospital. This is why it’s important to take extra precautions to keep your baby healthy.

Make sure everyone your baby comes in contact with gets a flu shot. Encourage friends and family to get a Tdap shot if they need it to prevent whooping cough. Don’t take your baby to crowded places where germs are easily spread. Wash your hands frequently, and make sure that anyone who has contact with your baby does the same.

Things to consider

Caring for a baby or child with a heart problem can be 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. You can talk about your fears and share what you know. This can be very reassuring.

Talk to a counselor if you’re having trouble coping. They can help you reduce stress, anxiety, and depression. Also talk with your doctor or a hospital social worker to find out about care options. Some groups offer respite care, day care programs, or home help services. Any of these can help you cope when you’re caring for a sick baby.

Questions to ask your doctor

  • Are there any special things I’ll need to do to care for my baby?
  • Will by baby have trouble eating?
  • What should I do if my baby isn’t gaining weight?
  • I am feeling overwhelmed. Where can I go for help?
  • What is respite care?
  • Could I receive home help services to help me with my baby?