A heart transplant is a surgery in which doctors remove a person's sick heart and replace it with a healthy donor heart.
Transplants are done when a child's heart does not work well and they won't survive without a new one. Doctors sometimes call this heart failure, or end-stage pediatric heart disease. They usually first try to treat heart failure with medicine, surgery, or other procedures. If those don't work, a child might need a heart transplant.
Transplanted hearts come from organ donors who have agreed (or their guardians have agreed) to donate their organs when they die. They choose to donate the organs because they want to help someone else who is sick.
Many kids who have heart transplants go on to live normal, healthy lives after they recover from surgery. They will take medicines for the rest of their lives to prevent the body from rejecting the heart (when immune cells attack the new heart because they sense that it's foreign).
What Happens Before a Heart Transplant?
If your child needs a heart transplant, your doctor will refer you to a transplant center. There, you'll meet the members of the transplant team, which usually includes:
transplant cardiologists (heart doctors who specialize in heart transplant)
The health care team will start a transplant evaluation to make sure that a transplant is the best option for your child. This will include:
blood tests: to determine blood type, check for viruses, and ensure that other organs (such as the kidneys and liver) are working well
an echocardiogram: a sonogram that creates a picture of the heart and shows how well it's working
an electrocardiogram (ECG or EKG): a test that records the heart's electrical activity and can help find any problems with its rhythm or damage to the heart muscle itself
cardiac catheterization: a procedure that lets doctors view the heart and its chambers while the patient is asleep under anesthesia
The transplant evaluation lets the team learn as much about your child as possible. But it's also a time for you and your child to learn about what will happen before, during, and after the transplant. The transplant team is there to provide information and support. Be sure to talk to them if you don't understand something.
If the transplant team decides the procedure could help your child, the next step is to put your child's name on the United Network for Organ Sharing (UNOS) transplant list. It might take several months to a year to find a heart that is a good match. The need for new hearts is far greater than the number donated, so this can take a long time.
You'll stay in close touch with the doctors and the rest of the health care team. Make sure they know how to reach you at all times. When a heart is available, you'll need to move quickly. Keep a bag packed and be ready to go to the transplant hospital at a moment's notice.
While you wait for a transplant, keep your child as healthy as possible. That way, they'll be ready for transplant surgery when the time comes. Help your child:
Eat healthy foods.
Take all medicines as directed.
Got to all medical visits.
Tell your transplant team right away if there is any change in your child's health, or if you plan to travel more than 2 hours away.
What Happens During Heart Transplant Surgery?
When you get to the hospital, the transplant team will prepare your child for surgery. They may run a few tests to be sure that the new heart is a good match. Then, your child goes to an operating room.
In the operating room, your child will get anesthesia to sleep through the operation. The surgeon makes an incision (cut) in the chest and removes the sick heart. The new heart is placed in the chest, and the surgeon connects it by sewing its blood vessels to the blood vessels in your child's body.
Most heart transplant surgeries last 4–6 hours. Someone on the transplant team will keep you informed about how the surgery is going while you wait.
What Happens After Heart Transplant Surgery?
After heart transplant surgery, your child be in the cardiac intensive care unit (CICU). You can visit your child there for brief periods. Your child will get medicine for pain. They will stay asleep on the ventilator with a breathing tube in place until the doctors know that the new heart is working well. This may take a few days.
How long your child will be in the CICU depends on their condition. Generally, the stay is 7–10 days. When ready, your child will be transferred to the general cardiac floor. The transplant team will continue to care for and closely watch your child.
Most children stay in the hospital 2–4 weeks after surgery. During this time, kids and their families learn how to care for the new heart. Be sure you understand the doctors' instructions because your child will need to follow them carefully.
In the weeks after going home, your child will return to the cardiology/transplant clinic often to make sure that everything is going well. Your child will usually have blood work done and tests such as an echocardiogram and EKG. These visits will happen less often over time.
What Problems Can Happen?
One of the most common problems after transplant surgery is rejection. It happens because the body doesn't recognize the new heart and doesn't know that it is helpful. The immune system tries to “attack” the new heart, much like it would attack bacteria or a virus that enters the child’s system. Rejection is common in the first year after transplant, and usually is treated by giving IV steroids to the child in the hospital.
To prevent rejection, doctors prescribe medicines (called immunosuppressants or anti-rejection medicines) that weaken the immune system. Your child will need to take anti-rejection medicines for the rest of their life. They're usually taken twice a day (morning and night). Missing doses increases the risk of rejection.
Because they weaken the immune system, the medicines also can increase your child’s risk of infections. Blood tests done at every clinic visit will make sure there is enough anti-rejection medicine in the system to prevent rejection, but not so much that your child gets frequent infections.
How Can Parents Help?
Children who have heart transplants can live normal, healthy lives after they recover from surgery. They return to school about 3 months after the transplant, and in time can do sports and other activities.
It's very important that you and your child do all you can to keep the new heart healthy. Be sure to:
Help your child take all medicines as directed and not miss any doses.
Bring your child to all transplant clinic visits as scheduled (after the first year, these are usually once every 3 months).
Talk to the transplant team about any concerns you have.
What Else Should I Know?
Having a serious condition can be hard for kids. Surgery and immunosuppressant therapy can add to the stress. Talk to your child about these changes and how you will work them into your routine. Find time to do fun things together with family and friends.
The transplant team is there to support your child and the whole family. If your child needs more support: