Congestive Heart Failure
In this condition the heart doesn't pump blood well enough for the body to get the nourishment it needs for normal work and activity. It doesn't mean that the heart will stop working. When the heart can't work as it should, fluid can build up in the lungs, causing difficult breathing. Fluid also may build up in the rest of the body, causing swelling. Children with congestive heart failure usually become very tired easily, have rapid or labored breathing, build up fluid, or have more than one of these symptoms. Medicines called diuretics are used to help get rid of the extra fluid, and a low-salt diet also may be necessary. Young infants with congestive heart failure are often hard to feed. Other medical treatment usually includes digoxin or other drugs that can cause the heart to contract with more force.
Normally, the heart beats regularly at 50-150 beats per minute, depending on the child's age. A very fast heart rate (tachycardia) sometimes occurs. It reduces the heart's ability to pump. A very fast heart rate may be related to a congenital heart defect, but not always. Sometimes medication is needed to slow the heart rate to normal.
A very slow heart rate (bradycardia) also may occur. It reduces the heart's pumping ability, too. This condition is usually a congenital problem but rarely occurs after surgery. In some cases, an artificial pacemaker may be needed. An irregular beat may be related to a congenital heart defect. It may also occur after surgery. Sometimes an irregular heartbeat needs to be treated, depending on its type.
If your child needs heart surgery, the operation is usually done in the same hospital where the diagnostic tests were done. The facilities will be familiar to both you and your child. Children are usually admitted just before the operation. They usually stay in the hospital for 5-10 days afterward. The recovery period in the hospital rarely lasts longer than that.
Sometimes the operating schedule is changed. For example, an emergency operation might delay your child's operation. You and your child should be ready for a possible delay.
Hospital rules about visiting times, clothing and toys vary. Most hospitals have a nurse or medical social worker to help you prepare for your child's hospital stay. Also, there's usually a person who can help you deal with your child's feelings and the effect of the illness on your family. You may want to talk with this person, or the pediatric cardiologist and surgeon, about how best to give your child emotional support.
Telling Your Child About Surgery
What to tell children about an operation depends upon three things: their age, ability to understand and emotional makeup. The pediatric cardiologist, surgeon and other specially trained medical staff at the hospital can help. They can talk directly to your child and advise you on how to present the facts. The truth is usually less frightening to children than trying to hide the facts and leaving them with their imagination and fears. You may not be able to do away with those fears, but you can help your child face them.
Your own outlook is reflected in your child's attitude both before and after surgery. Explain honestly and calmly what's wrong and tell your child what must be done to repair the heart defect. This will help develop a healthy attitude. Let your child help plan the hospital stay. Naturally, being honest with your child doesn't mean telling every detail that you've learned. Give your child information about some things that will happen. That way, when your child experiences them, he or she won't feel surprised or tricked.
Dealing With Common Fears
The hospital team will try to bring your child through the surgery with as little fear and pain as possible. No matter how much your child may come to like these hospital staff members, he or she will constantly turn to you for the emotional support that only a parent can give. Your support is especially important in preparing your child for when you will be separated in the operating room and recovery area. Assure your child that you'll be nearby and waiting to visit as soon as the doctors feel it's okay. If your child hasn't been away from you before, he or she may feel deserted and hurt. Your child may also feel that this is punishment for being naughty or disobedient. You can help by being reassuring and stressing how important the operation is.
You'll probably find that honesty is the best approach. When children aren't told anything, they may imagine something worse than reality. You absolutely should not make promises that you may not be able to keep. Young children don't need complex explanations. Your child does need to know you aren't dodging questions and will be there to share the experience. Touring the intensive-care unit and catheterization room may help.
Presenting the Positive Aspects
You can help your child by stressing the benefits of the heart surgery. Do this from the start and be as simple and clear as you can. Here's one approach you might try: "Your heart isn't working as it should but, it can be fixed. The doctors and nurses are your friends. They're going to help your heart work better. I want this heart surgery done because I love you. I know that it's the only way for you to feel better."
"During your operation you won't feel pain or be uncomfortable. The doctors will give you medicines so the operation won't hurt. After it's over, you'll have some pain, but the nurses will give you medicine to make you feel better."
"Right after the operation you'll stay in a special room and get extra attention from nurses and doctors. I'll be able to visit you very often. I'll always be nearby. After you've gotten stronger, you'll go back to your hospital room. When you're there, I should be able to stay with you and visit you more often.
"While you're staying in the hospital, you'll meet other children who are also getting well from heart surgery. They'll be getting ready to go home. You'll be able to go home, too, when the doctors say you're ready."
No matter how well prepared, your child may still cry, be angry or be depressed. Thinking about the pain and being away from the family during the operation can be traumatic. If your child reacts this way, say that it's perfectly normal to have these feelings. Tell your child that he or she will be healthier after surgery and will be ready to return home soon.
Obtaining Blood Donations
Blood transfusions are needed for most heart operations. The amount of blood required depends upon the procedure. Blood is sometimes in short supply, so it helps to give blood to the blood bank to replace the blood your child uses. Matching blood types exactly or other technical problems may make it impossible to give your child the same blood you donated. A member of the cardiology or surgical team will help you arrange a blood donation. Blood is carefully screened for your child's blood type and for many kinds of infections, including AIDS.
In the Operating Room
Because heart operations are so complex, an entire team of physicians, technicians and nurses - all heart specialists - work with your child. The surgeon concentrates on the surgery; others operate the complex equipment that maintains the patient's circulation, breathing and other life functions.
A heart/lung machine is used for open-heart surgery. It supplies oxygen to the blood and pumps the blood through the body, bypassing the lungs and heart. Then the patient's heart can be opened safely and repaired. With this technique, the surgeon can clearly see the inside of the heart and the defect, so it can be corrected. After the operation the heart and lungs resume pumping and adding oxygen to the blood.
Some operations are done without the heart/lung machine and are called closed-heart surgery. Some infants may need a procedure called hypothermia. This involves lowering the infant's body temperature. It lets the surgeon stop all blood circulation to safely repair the heart.
After surgery your child will go to the intensive-care unit. Specially trained doctors, nurses and technicians give round-the-clock care. Don't be alarmed by all the equipment and tubes. They're routine and necessary and will be used only as long as they're needed. Some of the special equipment you'll see includes:
- breathing machines (ventilators)
- breathing tubes placed in the windpipe (endotracheal tubes)
- tents or hoods to give extra oxygen
- chest tubes placed during the operation to drain blood or fluid from the chest
- several intravenous lines to give blood, fluid and medicines
These are all part of the intensive care that children require after surgery. Team members will explain how your child will be cared for in the intensive-care unit. They'll also explain how the special equipment will be used after the operation. Because your child needs constant care, you may be able to see your child only briefly right after the operation. Your child will be kept comfortable with sedatives when needed. He or she usually will be very drowsy or asleep at this time.
Further Hospital Care
After leaving the intensive-care unit, your child will return to the regular hospital care unit. There you'll be able to play a bigger role in your child's care, perhaps staying in the room. Often your child will be placed on a physical therapy program of coughing, and chest and breathing exercises. These maneuvers help prevent lung and breathing problems. As time goes by, your child will need pain-relieving medications less often. Encourage your child to be more active as the doctor advises.
After surgery, some children need a low-salt diet to reduce the buildup of fluids in the body. Medications such as diuretics, digoxin or antibiotics may be ordered. Some children have a fever for several days after the operation, which may be a reaction to the surgery. If the fever doesn't go away, your doctors may run tests to find out its cause and how to treat it.
Soon your child will feel much better and be ready to leave. A few cardiac diagnostic tests may be done before discharge to check on the results of the surgery. When your child feels better and the doctors are satisfied that the recovery period is going well, it's time to go home. Your child will have surprisingly little pain and improve rapidly each day.