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. The healthy heart comes from an organ donor. Heart donors
are adults or children who are 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 unless their heart is replaced. Illnesses that affect
the heart in this way include:
What are the risks of a heart transplant for a child?
There are risks with any surgery, especially major surgery like this. Risks include:
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 help 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. Or it may 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?
At the hospital, your child will have tests to confirm that 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:
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Just before the surgery starts, your child gets sleep medicine (general anesthesia).
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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.
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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.
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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 depending on their condition
after surgery. Your child's transplant team will help you learn how to care for your
child during this time. They will give you information about medicines, physical activity,
follow-up care, diet, and other instructions.
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. Anti-rejection medicines
help prevent this from happening to your child's new heart. Your child will need to
take anti-rejection medicines for the rest of their life.
The most common symptoms of rejection include:
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 in the first few months after surgery. This is because
higher doses of anti-rejection medicines are given during this time. These medicines
weaken the immune system, increasing the risk of infections. Your child will have
blood tests to measure the level of anti-rejection medicine in their body. For example,
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:
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 any test or procedure for your child make sure you know:
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The name of the test or procedure.
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The reason your child is having it.
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What results to expect and what they mean.
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The risks and benefits of the test or procedure.
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When and where your child is to have it.
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Who will do the procedure and what that person’s qualifications are.
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What would happen if your child didn't have the test or procedure.
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Any alternative tests or procedures to think about.
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When and how will you get the results.
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Who to call after the test or procedure if you have questions or your child has problems.
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How much you'll have to pay for it.