Heart Transplant for Children

What is a heart transplant for a child?

A heart transplant is a surgery to replace a diseased heart with a healthy one from an organ donor. Organ donors are adults or children who have become critically ill, often because because of injury. They will not live because of their illness or injury. If the donor is an adult, he or she may have agreed to be an organ donor before becoming ill. Parents or spouses can also agree to donate a relative's organs. Donors can come from any part of the U.S.

Why might my child need a heart transplant?

Heart transplants are recommended for children who have serious heart problems. These children are not able to live without having their heart replaced. Illnesses that affect the heart in this way include complex congenital heart disease, present at birth. They also include 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 of the transplant
  • Infection, especially from antirejection medicines
  • Heart failure
  • Bleeding
  • Blood clots
  • Lung problems

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

Many tests are done before the heart transplant. These tests include blood tests that will make it more likely that the donor heart will not be rejected. 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, he or she will 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 follow your child. You can also get help from support groups during this difficult waiting time.

Each transplant team has its own guidelines about how you will be told when a donor organ is available. In most cases, you will be called when an organ is available. You will be told to come to the hospital right away so your child can get ready the transplant. This call can come at any time, so you should always be ready to go to the hospital. 

What happens during a heart transplant for a child?

Once at the hospital, your child will have tests to confirm the match of the organ. Once the test results are available and your child is ready, he or she will 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 tell you about the progress of the transplant. The general steps of heart transplant surgery are:

  • Just before the surgery begins, your child will get sleep medicine (general anesthesia). 
  • The surgeon uses the open-heart method. This means he or she makes a large cut (incision) into your child's chest. The breastbone is spread to reach the heart.
  • Your child is hooked up 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 will remove your child's heart. He or she will then put the new heart in your child's chest and stitch it into place.

What happens after a heart transplant for a child?

After the surgery, your child will go to the intensive care unit (ICU) to be watched closely. The length of time your child will spend in the ICU will vary. After your child is stable, he or she will be sent to the cardiac unit. Your child will continue to be watched closely. Your transplant team will help you learn how to care for your child during this time. This will include information about medicines, activity, follow-up, diet, and any other specific instructions from your child's transplant team.

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. Medicines (antirejection) are used to help prevent this from happening.

These are the most common signs and 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 immediately if any of these symptoms happen.

Your child will need to take antirejection medicines for the rest of his or her life.

Because antirejection medicines weaken the immune system, children who get transplants will be at higher 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.

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. Your child will most likely take medicines to prevent other infections from happening. Your child is at increased risk for 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 to check for rejection
  • Continued education for you and your child
  • Medicine changes

Your child will need lifelong follow-up with transplant specialists. Make sure you keep all appointments. It is 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 did not 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 will you have to pay for the test or procedure

Pediatric Heart Care at Johns Hopkins

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