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

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

You probably 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. Don’t be afraid to pick up and hold him or her. Your baby needs your love and attention. Play with your baby. Talk with your baby. These things are important for both of you. But there are a few things to pay special attention to, including your own health.

Path to improved health

Feeding your baby

Breastfeeding a baby who has heart disease can be more challenging because he or she gets tired so quickly. But breast milk is the best food for your baby. It helps protect him or her from infections. An infection could make your baby’s heart problem worse. If you’re having trouble breastfeeding, talk with your doctor. Your doctor may suggest that you see a lactation specialist.

Your doctor also may recommend you give your baby formula. You may need a special kind that has extra calories. This can help your baby gain weight. Your doctor, a pediatric nutritionist, or dietician can help you choose a good formula.

Babies who have heart disease tend to get tired easily while they’re feeding. If feeding makes your baby tired, try giving smaller amounts of breast milk or formula at one time. But feed your baby more often. Burp him or her 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 your baby out. He or she won’t have enough energy left to eat well. Look for cues that he or she is hungry. These could include making sucking motions, sucking on a fist, or fidgeting.

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.

Things to consider

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

Make sure everyone your baby is around gets a flu shot. Encourage friends and family to get a Tdap shot if they need it to prevent whooping cough. Be sure that your baby gets all recommended vaccines, as well. 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.

Caring for a baby or child with a heart problem can be emotional and stressful. Information and support can help you feel better. Connect with parents of other children with a heart problem. They can understand what you’re going through and share coping skills. And you can talk about your fears. This can be very reassuring.

Talk to a counselor if you’re having trouble coping. He or she 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 help at home services. Any of these can help you cope when you’re caring for a sick baby.

Questions to ask your doctor

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