Heart Transplant for Children

What is a heart transplant for a child?

A heart transplant is surgery to replace a heart that isn't able to work the way it needs to with a healthy one from an organ donor. Heart donors are adults or children who have become critically ill (will not live), often because of injury. If the donor is an adult, they may have agreed to be a donor before becoming ill. Parents or spouses can also agree to donate a relative's organs.

Why might my child need a heart transplant?

Heart transplants are recommended for children who have serious heart problems. These children won't be able to live without having their heart replaced. Illnesses that affect the heart in this way include:

  • Complex heart disease present at birth (congenital)
  • Heart muscle disease (cardiomyopathy)

What are the risks of a heart transplant for a child?

There are risks with any surgery, especially major surgery like this. Risks include:

  • Failure or rejection of the transplanted heart
  • Infection, especially from antirejection medicines
  • Heart failure
  • Bleeding
  • Blood clots
  • Lung problems
  • Death

How do I get my child ready for a heart transplant?

Many tests are done before the heart transplant. These include blood tests that will make it more likely that the donor heart will be successful. Other tests are done to make sure your child and your family are emotionally ready for the transplant. Your child will need your support during this process.

If your child is a good candidate for a heart transplant, they'll be put on the United Network for Organ Sharing (UNOS) list. Sometimes children wait only a few days or weeks before getting a donor organ. It may also take months or years before a suitable donor organ is available. During this time, your child's healthcare provider and the transplant team will closely watch your child's health. You can also get help from support groups during this difficult waiting time.

Each transplant team has its own guidelines about how you'll be told when a donor organ is available. In most cases, you'll be called when a heart is available. The team will tell you to come to the hospital right away so your child can get ready for the transplant. This call can come at any time, so you should always be ready to go to the hospital. Sometimes a child may already be in the hospital while waiting for a donor heart to become available.

What happens during a heart transplant for a child?

Once at the hospital, your child will have tests to confirm the heart is a match. Once the test results are available and your child is ready, they'll go to the operating room. The transplant surgery may take 4 or more hours. The time it takes depends on many things. During the surgery, a member of the transplant team will keep you up to date on its progress. The general steps of heart transplant surgery are:

  • Just before the surgery starts, your child gets sleep medicine (general anesthesia). 
  • The surgeon uses the open-heart method. This means they make a large cut (incision) in your child's chest. Then they spread the breastbone open to reach the heart.
  • Your child is connected to a heart-lung bypass machine. The machine acts as your child's heart and lungs. It pumps blood through your child's body during surgery. 
  • The surgeon removes your child's heart. They then put the new heart into your child's chest and stitch it in place.

What happens after a heart transplant for a child?

After surgery, your child will go to the intensive care unit (ICU) to be watched closely. The length of time your child spends in the ICU will vary. Your child's transplant team will help you learn how to care for your child during this time. They will provide information about medicines, physical activity, follow-up care, diet, and any other specific instructions needed.

Organ rejection is a normal reaction of the body to a foreign object. The body's immune system makes antibodies to try to destroy the new organ. Antirejection medicines are used to help prevent this from happening to your child's new heart. Your child will need to take antirejection medicines for the rest of their life.

These are the most common symptoms of rejection:

  • Fever
  • Decreased urine or fewer wet diapers than usual
  • Fast heart rate
  • Fast breathing rate
  • Weight gain
  • Tiredness
  • Irritability
  • Poor appetite

Your child's transplant team will tell you who to call right away if any of these symptoms happen.

The risk for infection is higher during in the first few months after surgery. This is because higher doses of antirejection medicines are given during this time. These medicines weaken the immune system, increasing the risk for infections. Your child will have blood tests to measure the level of antirejection medicine. For example, blood tests will be done to check white blood cell counts. Your child will also likely take medicines to prevent infections, such as oral yeast infections (thrush), herpes, and respiratory viruses.

Your child will be closely followed after leaving the hospital. Follow-up visits may include:

  • Complete physical exam
  • Blood tests
  • Echocardiogram
  • Cardiac catheterization
  • Heart biopsy
  • Continued education for you and your child
  • Medicine changes

Your child will need lifelong follow-up visits with transplant specialists. Make sure you keep all your appointments. It's especially important that you report any signs of rejection right away.

Next steps

Before you agree to the test or the procedure for your child make sure you know:

  • The name of the test or procedure
  • The reason your child is having the test or procedure
  • What results to expect and what they mean
  • The risks and benefits of the test or procedure
  • When and where your child is to have the test or procedure
  • Who will do the procedure and what that person’s qualifications are
  • What would happen if your child didn't have the test or procedure
  • Any alternative tests or procedures to think about
  • When and how will you get the results
  • Who to call after the test or procedure if you have questions or your child has problems
  • How much you'll have to pay for the test or procedure