Note to Child's Parents

To the parents of a child who needs heart surgery:

When you first found out about your childs heart problem, you may have had lots of confused feelings. One of the best ways you can help your child during this time is to be informed. This booklet is to help you know what to expect when your child has a heart operation. Learn all you can about what is to happen and what you child and you can expect. You are encouraged to ask your childs cardiologist, heart surgeon, and anesthesiologist any questions regarding your childs anesthesia and surgery.

If you child's doctor gives you guidelines that are not the same as these, you should follow the directions of your child's doctor.

Types of Surgery

The type of surgery used depends on your child's heart problem.

Open Heart - Open heart surgery is done when the problem to be repaired is one the inside of the heart. The heart-lung machine is used during the surgery to do the work of the heart. It pumps blood for the heart and adds oxygen for the lungs. Most of the time, incision goes straight down the chest the length of the breastbone, where the breastbone is separated.

Close Heart - Most often, closed heart surgery is used when the problem to be repaired is on the outside of the heart. The heart-lung machine is not needed because blood continues to pump through the heart and lungs during the surgery. In most closed heart operations, the incision is made on the side, either right or left between the ribs to reach the blood vessels that need repair. In certain instances, the surgical repair is multi-staged and there may be one or even two palliative/preparatory procedures before the definitive operations.

Before Surgery

In certain cases, a cardiac catheterization may be done to show the type of heart problem and how severe it is.

The Night Before

Day of Surgery

A nurse and you will be accompanying your child down to the surgery waiting area. Under certain circumstances, you may accompany your child into the operating room, depending on the anesthesiologists discretion.

Your child will be given anesthesia to keep him asleep during the operation. Once asleep, a breathing tube (endotracheal tube) is put in his windpipe and attached to a ventilator to help him breathe.

A lot of equipment is used to monitor your childs body during surgery. Arterial line is put in an artery to monitor his blood pressure. Pulse oximeter is attached to the finger to measure the oxygen in the blood. A urine catheter may be put into the bladder to monitor the function of his kidney.

Your child may be in the Operating Room for 3-8 hours depending on the type of surgery. Heart surgery does not take that long but time is needed to get your child ready for the surgery and to complete it.

Once the surgeon has finished working on the heart, chest tubes may be put in to let extra fluid and blood drain out.

Some infants and children who have open-heart surgery may need a temporary pacemaker. This is a small box outside the body that is hooked up to wires on the heart. The pacemaker helps if the heart rhythm is irregular or needs extra beats until the heart recovers from the stress of surgery.

All these wires and tubes will be removed when your child recovers and before he leaves the hospital.

If the breastbone has been opened, it will be wired together in place. The wires will stay in the chest and are only seen on chest x-rays. These will not make metal detectors go off or keep your child from having special x-ray tests like magnetic resonance imaging. The incisions will be closed with stitches under the skin that later dissolve.

After Surgery

Immediately after surgery, your child will receive care by a team of specially trained nurses and respiratory therapists in ICU. The cardiac surgeon will talk to you about your childs surgery, and you will be able to visit your child within hour after the surgery.

Some of the equipment and tubing used during surgery will still be attached to him in the ICU. Slowly the tubes and wires will be removed as your child improves and gets stronger over a number of hours or days.

While in the ICU, the respiratory therapist will make sure your child is breathing normally. Periodically she will do chest percussion and suctioning on your child to help him breath better.

Parents play a big part in the healing process. You may be nervous to touch or talk to your child. It is alright to stroke, touch and talk to your child even if the breathing tube is still in. Hearing your voice will assure him you are close by and make him feel more secure and less afraid.

Most children will start drinking fluid within 24 hours, and gradually be able to eat, after the breathing tube is taken out.

Pain relief is an important part of your childs recovery. Nurses and doctors are concerned about your child being in pain after heart surgery. Pain killers and drugs to reduce anxiety are used to help with your childs pain. Medicines are given through the IV and work quickly.

Sometimes your child may have trouble expressing what he wants. This may cause fear, anxiety or frustration, and may make them cry. It is alright to let your child cry because it will help in chest expansion. Comfort measures such as changing position, giving him a back rub, brushing his hair, reading a story, or singing softly will help calm your child.

Back to the Wards

Children recover quickly, though each child recovers at a different rate.As your child no longer need constant care and monitoring, he will be moved from the ICU back to the regular ward.

It is not unusual for parents to feel apprehensive and uncertain about taking a child out of the security of constant monitoring from expert medical team and special equipment.Remember, though, that the doctor will not let your child leave until he thinks your child has recovered enough to be transferred and gradually continue recovery at home.

After the move to a regular pediatric ward, your main job is to learn what to do once you get your child home.

Children are generally up and about sooner than adults in similar situations. For younger children, our physiotherapist may come by to give the child chest percussion and suctioning to prevent breathing complications. Older kids may be encouraged to maintain the use of triflow hourly while awake until they are more active and running about to help clear their lungs.

Home Again

Medication

It is not easy to give a child medication, but it is very important that your child gets all his medications as prescribed by his cardiologist. Do not change any of his medications unless your childs cardiologist has been consulted. You must learn to give the medicines and know what each does.

Diet

Your child will be allowed to have normal diet as soon as he can start tolerating his feeding. There are no limitations on his diet unless your childs heart surgeon or cardiologist instructs otherwise.

Incision Care

Your childs wound will remain exposed once the initial surgical bandage has been taken off. The wound requires about six weeks to heal completely. Most of the time, no special care is needed for the incision or chest tube sites. But you should look for redness or darkness, swelling or drainage from these areas and notify your childs doctor immediately. You may shower your child after you go home. Wash the incision gently with a mild soap; rinse well and pat dry with a clean towel. DO NOT scrub or rub the incision. NEVER apply powders, lotions directly on the incision.

Endocarditis Prophylaxis (Prevention of infection in the heart)

In order to prevent endocarditis, it is important for your child to have his cardiac review as advised by his cardiologist periodically. Always notify the cardiologist in the event of prolonged fever. Talk to your childs doctor regarding antibiotic prophylaxis for any surgical or dental procedures likely to lead to bacterial endocarditis.

Follow-up Care

After leaving the hospital, your child will have checkup appointments with the heart surgeon and the pediatric cardiologist. These appointments will be made before you leave the hospital. It is important to keep these appointments in order to monitor your childs recovery and progress. Make sure you have enough of each medicine your child is taking to last until the next appointment.

Immunization

It is very important to keep up with your childs immunization schedule. Immunization is a way to protect your child from avoidable diseases. Follow the instruction of your childs pediatrician and keep your childs immunization appointment.

Activity

Generally children knows what their physical limitations are. After the surgery, try not to treat your child "special" any longer than the normal recovery time. Unless the doctor has said not to, encourage your child to go and play with other children. The heart problem is repaired. This is the time to let him grow and develop as if he never had a heart problem.

Returning to School/Day Care

There should be no reason to keep your child at home all the time. As soon as he feels better, tolerating his feeding and activities well, he could go back to school or Day Care. Avoid carrying or lifting weights, and carrying school bags for two months. Just try to keep your child away from sick people, and make sure his teacher knows his condition and the person to contact in case of emergency.

When to Call the Doctor