Congenital Heart Disease: Care For Your Baby and
Yourself
What does congenital heart disease
mean?
Congenital means
that your baby was born with it. Heart disease means there is
a problem with the heart.
Did I do something during pregnancy that
made my baby have this problem?
It's normal to worry that something you did could have
caused the problem, but most of the time doctors don't know
what caused it. Talk with your family doctor if you're worried
that you caused your baby's heart problem, but don't blame
yourself.
I was 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.
Is it okay to pick up my
baby?
Yes. Try not to 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 with heart
disease may get tired easily while they're feeding. If feeding
makes your baby tired, try giving smaller amounts of milk or
formula 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
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, so he or she can 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 decide to use formula, you may need to use a
special kind that has 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 uses 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 (ICU) or 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.
Source
Caring for Infants with
Congenital Heart Disease and Their Families (American Family
Physician April 1, 1999, http://www.aafp.org/afp/990401ap/1857.html)
