Pediatric Heart Transplantation
A heart transplant is an operation in which a cardiothoracic surgeon will replace your child’s failing heart with a new donor heart. Reasons that children would require a heart transplant can be different than those for adults. Children often require transplant because of a congenital heart defect (a defect that was present at birth) and cardiomyopathies (diseases of the heart muscle). Similar to adults, children also can require transplant due to acquired disease.

According to the American Heart Association, congenital heart defects are the most common type of birth defect. They affect 8 out of every 1,000 newborns. Each year, more than 35,000 babies in the United States are born with congenital heart defects.

More than 400 heart transplants are performed in pediatric patients each year, according to the International Society for Heart and Lung Transplantation.

Preparing Your Child for Heart Transplantation
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Preparing for Heart Transplantation

The process of preparing your child for a heart transplant is similar to the process adults go through when waiting for a transplant. If your child’s doctor or heart specialist determines that the heart problem cannot be treated with medication or corrective surgery, a transplant may be recommended and you will be referred to a transplant specialist. 

After meeting with the transplant specialist, your child will have to undergo a full evaluation to determine if he or she is a candidate for transplant. This evaluation can include a physical examination, x-rays, blood tests, or other diagnostic imaging tests, as well as additional tests to evaluate your child’s heart and lung pressure and overall function.  

Once the transplant team has finished its evaluation and your child has been accepted as a transplant candidate, he or she will be placed on the nationwide transplant waiting list.

If your child currently is on the heart transplant waiting list but no donor heart is available, your doctor may consider using a ventricular assist device (VAD) until a heart becomes available. A VAD is a miniature pump that is implanted in your child’s chest to help the heart pump blood through the body. Essentially the pump takes over the function of the heart when it is too weak to function on its own. 

While your child is on the waiting list, your transplant center will provide you with a pager or cellphone, which they will use to notify you when a potential donor organ is available for your child.

You must keep this cellphone or pager charged and turned on at all times.

The Waiting List
Blood type
Donor blood type must be the same
Heart Size
Size must match between you and the donor
Overall medical condition
Your child's overall health will impact placement on the list
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The Waiting List

A number of factors determine your child’s initial place on the donor heart waiting list including:

  • Blood type
  • Heart Size (size must match between you and the donor)
  • Overall medical condition

The order of the waiting list fluctuates over time. Some patients may experience enough improvement in heart function from other treatments to be taken off the list, while other patients may become sicker so they move up the list more quickly.

When you are notified that a donor heart is available, you and your transplant team have a limited amount of time to decide to accept the donation, and you will be expected to travel immediately with your child to the transplant hospital.
The Operation
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The Operation

Your child will receive a donor heart that is appropriately sized for his or her chest to ensure that it will be able to grow within your child’s body as they age.  

Similar to an adult transplant, your child’s heart transplant should take roughly 3 to 4 hours. In children that have undergone one or more previous heart operations, the time of the surgery could be twice as long or longer. During the operation, a cardiothoracic surgeon who specializes in heart transplantation will removed your child’s diseased heart and will then place the new heart into his or her chest and sew into place. 

Your child will be placed under general anesthesia during the procedure and also will be placed on a heart-lung machine (sometimes called “the pump”) during the operation. The machine temporarily takes over the function of the heart and lungs during surgery to maintain blood circulation and oxygen flow through the body. After the surgery is completed, your child will be taken off the pump, and his or her heart and lungs will resume normal function.

Similar to adult heart transplant patients, your child will need to stay in the hospital for at least 7 to 21 days following the operation. For the first 24 to 48 hours, he or she likely will need to be in the intensive care unit (ICU) so doctors and nurses can carefully monitor your child’s heart function.
Recovery
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Recovery

Close follow-up is critical during the first few days after a transplant to ensure that your child does not get an infection and that his or her new heart is working well.

The initial recovery period for heart transplantation is about 6 months. If you traveled out of state for your child’s surgery, your transplant team may ask you and your family to stay close to the hospital for the first 3 months after your child is discharged so they can better monitor his or her recovery.

As your child grows, the transplanted heart will grow too, just like a normal heart.  

Your child will need to make regular appointments with a heart specialist and take immunosuppressive medications and other medicine for the rest of his or her life to control the side effects of the transplant. 

As your child ages and reaches young adulthood, he or she will be referred to an adult heart transplant specialist to continue treatment. Be sure to speak with his or her pediatric heart specialist to ensure you understand how your child’s care will continue throughout life. 

Reviewed by: Robbin G. Cohen, MD
July 2016 

Previously reviewed by Lauren Kane, MD 
 

The Society of Thoracic Surgeons

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