What is surgery to repair a congenital heart defect?

A congenital heart defect is a problem with how a child's heart formed. The defect can affect how blood flows through the heart or blood vessels. The heart may have a hole between its chambers, or a valve or artery may not have formed the right way. Or a heart valve, artery, or chamber may not have formed at all.

The type of surgery your child has will depend on the type of defect.

The doctor will make a cut (incision) in your child's chest. The incision usually is made through the breastbone (sternum) and is called a sternotomy. But some types of heart defects are repaired through an incision on the side of the chest between the ribs, called a thoracotomy. During the surgery, the doctor may connect your child to a machine that does the jobs of the heart and lungs (heart-lung bypass machine). This machine will allow the doctor to stop your child's heartbeat while the repair is done. If a heart-lung bypass machine is used during surgery, the doctor will restart your child's heartbeat and stop the heart-lung machine after they fix the defect.

After the doctor repairs the defect, they will use stitches to close the incision in the chest.

Your child will probably spend up to 1 week in the hospital. The amount of time your child needs to recover depends on the type of surgery they had.

Having a child with a heart problem can be scary. You may feel overwhelmed. Learning as much you can about your child's treatment can help you feel better. You may also want to talk with other parents who have a child with similar problems.

What happens before surgery?

Surgery can be stressful both for your child and for you. This information will help you understand what you can expect. And it will help you safely prepare for your child's surgery.

Preparing for surgery

• Understand exactly what surgery is planned, along with the risks, benefits, and other options. Ask your child if they have any questions.
• Tell the doctor ALL the medicines and natural health products your child takes. Some may increase the risk of problems during the surgery. Your doctor will tell you if your child should stop taking any of them before the surgery and how soon to do it.
• Talk to your child about the surgery. Be honest with them. Tell your child that the surgery will help their heart work better. Hospitals know how to take care of children. The staff will do all they can to make it easier for your child.
• You will get a tour of the pediatric cardiac intensive care unit (PCICU). This may make your child feel less nervous about what happens.
• Plan for your child's recovery time. They may need more of your time right after the surgery, both for care and for comfort.

The day before surgery

• A nurse may call you (or you may need to call the hospital). This is to confirm the time and date of your child's surgery and answer any questions.
• Remember to follow your doctor's instructions about your child taking or stopping medicines before surgery. This includes over-the-counter medicines.

What happens on the day of surgery?

• Follow the instructions exactly about when your child should stop eating and drinking, or the surgery may be cancelled. If the doctor has instructed you to have your child take their medicines on the day of surgery, please have your child take the medicine using only a sip of water.
• See that your child has bathed. Do not apply lotions or deodorant.
• Your child may brush their teeth. Remind your child not to swallow any toothpaste or water.
• Be sure your child has something that reminds them of home. A special stuffed animal, toy, or blanket may be comforting. For an older child, it might be a book or music. Leave any valuable items at home.

At the hospital or surgery centre

• A parent or legal guardian must accompany your child.
• Your child will be kept comfortable and safe by an anesthesia provider. Your child will be asleep during the surgery.
• Before your child's surgery, the doctors or nurses will ask you to repeat your child's full name and what surgery they're having.
• A small intravenous (IV) tube is usually placed in a vein, to give fluids and medicines. This tube may be placed in the pre-op area or in the operating room after your child is asleep. Because of the medicines given, your child may not remember much about the operating room.
• The surgery will take at least several hours. The amount of time that the surgery will take depends on the type of operation needed.
• After the surgery, your child will be taken to the PCICU.
• Before your child wakes up, the doctor will probably talk to you about the surgery. When your child wakes up in the PCICU, the nurse will check their vital signs (temperature, blood pressure, pulse rate, and breathing) and make sure that your child is comfortable. You will be allowed to see your child soon after surgery.
• Your child may have a breathing tube down their throat. This may be removed several hours after surgery, or the doctor may leave it in place for several days.
• Your child may have a thin plastic tube, called a catheter, in a vein in their neck. It is used to keep track of how well your child's heart is working. The doctor will probably take it out in 1 to 3 days.
• Your child will have chest tubes to drain fluid and blood from their chest after surgery. The fluid and extra blood are normal and usually last only a few days. The chest tubes are usually removed in a few days.
• Your child may have one or more thin wires (called pacing wires) coming out of their chest near the incision. These wires can help keep your child's heartbeat steady after surgery. They will be removed before your child goes home.

Going home

• Your child will probably be tired when they come home. Encourage rest the first few days, but expect your child to want to be more active as they heal and feel better.
• Follow your healthcare team's instructions about when your child can do intense exercise, such as sports, running, or physical education.
• When you leave the hospital, you will get more information about how to take care of your child at home.