Congenital Heart Defects: Caring for Your Child

Caring for children with congenital heart defects can be challenging. The following tips may help you care for your child so that he or she is as healthy and comfortable as possible. These tips may also help you cope with the difficulties that parents often experience.
Caring for your child in the hospital
You and your child might take many trips to the hospital or doctor’s office for tests, procedures, or surgery.
It’s normal to be frightened and worried about your child being in the hospital. Ask questions about any procedures that you don’t understand or any special care that is needed. In general, try to be with your child as much as possible.
What to expect
While your child is in the hospital for surgery, treatment may involve:

Receiving intravenous(IV) fluids until your child wakes up after surgery and can eat.
Having oxygen levels in the blood measured with a pulse oximeter.
Making adjustments to help make breathing easier. Your child may have the head of the bed or crib raised, be given oxygen (through a hood, tent, or face mask), or sometimes be given treatment with a breathing machine called a ventilator.
Draining fluids from the chest after surgery. Pressures within the body also may be measured.

How to help
The following are tips to help your child while he or she is in the hospital:

Take some of your child’s familiar things to the hospital. Favorite toys or blankets will help the child feel more at ease.
If you cannot stay with the child, visit often.
Take some pictures of the family. Place them where your child can easily see them. Talk about what is happening with other family members or sing favorite songs.
Tell the nurses about your child’s habits, typical routines, and general preferences.
Tell the nurses about any special words that your child may use to tell others what he or she needs.
If your child is a newborn, hold and touch him or her often to promote bonding.
As much as possible, help the hospital staff with your child’s care. Find out whether you will be responsible for any treatments at home. Take this time to learn how to do these treatments while the hospital staff is there to teach you.

Coping with oxygen problems
Some heart defects, called cyanotic defects, cause oxygen problems. This means that the child’s body isn’t getting a normal amount of oxygen. Children with cyanosis may have a bluish tint to the skin.
If your child has “blue spells”:

Attempt to calm the child. This is the most important thing you can do.
Try placing the child with his or her knees to the chest—either on the back with the knees drawn up to the chest or in a sitting position with the chest to the knees.
You may need to give your child oxygen if the spells are severe and don’t improve with a change in position. Oxygen is given by placing a small tube at the entrance to the nostrils. Your doctor will determine the proper amount of oxygen needed.
Try to prevent the cyanosis by keeping your child warm, decreasing activity, and frequently feeding small meals.
Notify your child’s doctor when a blue spell occurs.

Oxygen therapy
Your child may need extra oxygen at home. It is given through a small tube that rests at the entrance to your child’s nose. Oxygen can cause a fire to burn very rapidly, so no smoking or open flames are allowed in the room where oxygen is being used. The amount of oxygen will be prescribed by your child’s doctor. Don’t change the amount of oxygen you give your child without the advice of your doctor.
Giving medicine
Be sure you know how to give your child’s medicines safely. Heart medicines can be very strong, so they can be dangerous if they are not given correctly.

Be sure you understand how much medicine to give and how to give it.
If your child takes a blood thinner, be sure to get instructions about how to give this medicine safely. Blood thinners can cause serious bleeding problems.
If you aren’t comfortable giving medicine to your child, ask a health professional to help you.
A home health nurse can help. Talk to 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.