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PEDIATRIC SERVICES

Surgery & Treatment

Pediatric Heart Transplantation

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What is a Pediatric Heart Transplant?

What is a Pediatric Heart Transplant?

A pediatric heart transplant involves removing a child’s failing heart and replacing it with a healthy one. A heart transplant is performed when a child has end-stage heart failure due to either cardiomyopathy or complex congenital heart disease and won’t survive without a donor’s heart.

Heart transplants are performed when all other medications and treatment options have failed. Although the procedure is a major operation, many children go on to live healthy, normal lives after recovering from surgery.

How is a Pediatric Heart Transplant Performed?

Procedure

Potential heart transplant recipients may wait for a donor’s heart in the hospital or at home, depending on the clinical situation. When a donor’s heart becomes available, the heart transplant team performs a thorough virtual evaluation of the heart to determine if it is a suitable match. Once the match is confirmed, an organ procurement team is sent to the hospital where the donor is located, and your child will be taken to the operating room. The heart transplant surgery can take up to four hours or more.

The traditional steps of a heart transplant surgery include:

  1. Before the surgery, your child will receive general anesthesia
  2. The surgeon will make an incision into the chest, spreading the breastbone to access the heart
  3. Your child will be connected to a heart-lung bypass machine. This device acts as a substitute for the heart and lungs, pumping blood through the body during the procedure.
  4. The surgeon will remove the heart, replace it with the healthy donor heart, and stitch it into place

Recovery from heart transplant surgery can vary and is partially dependent on the status of the heart recipient leading up to the surgery. Children typically stay in the hospital for two to three weeks after heart transplant surgery, although this time period can be longer or shorter.

During the immediate recovery period, a breathing tube will be put in place, and pain medications and sedatives will be administered to keep patients comfortable. Medication is used to help support the donor heart initially, and as the heart strengthens, the breathing tube is removed and sedatives/medications are gradually weaned off.

Risks to Consider for a Pediatric Heart Transplant

Risks

As with any major surgery, there are risks to having a heart transplant. Complications include:

  • Bleeding
  • Infection
  • Failure of the transplanted heart
  • Kidney dysfunction
  • Blood clots
  • Lung issues

The risk of rejection (the body failing to accept the donor’s heart) is highest during the first few weeks after the transplant procedure. Anti-rejection medication is started immediately after the implantation of the donor’s heart and is continued for the rest of the child’s life.

Preparing for a Pediatric Heart Transplant

Preparing

To prepare for a pediatric heart transplant, your child will undergo a series of tests. Blood tests will be conducted to evaluate if there is a predisposition to certain types of rejection of a donor’s heart. Imaging tests will be performed so that the surgeons may precisely prepare for the upcoming transplant surgery. Emotional support will also be available for you and your child ahead of surgery.

Your family could be waiting days, weeks, months, or even years for a viable donor heart. Your doctors and transplant team will be in consistent contact and may connect you to emotional support groups to help manage the stress of waiting.

A donor heart can become available at any time. For families waiting at home, it’s a good idea to have your go-to bags packed and ready for your stay in the hospital.

What to Expect After a Pediatric Heart Transplant

After the Surgery

After a pediatric heart transplant, your child will be closely watched in the intensive care unit (ICU) then transferred to the cardiac unit for recovery. During this time, your doctor and transplant team will inform you about medications, approved activities, diet, and other instructions for continuing care at home.

After surgery, it’s important to watch for signs of rejection or infection, including:

  • Fever
  • Accelerated heart rate
  • Decreased urination
  • Rapid breathing
  • Fatigue
  • Irritability
  • Poor appetite

Your child will require medication, routine exams, and testing for the remainder of their life. They must continue to monitor for signs of heart rejection.

FAQs

FAQs

The most common conditions that require a pediatric heart transplant are cardiomyopathy and congenital heart disease. There are different types of cardiomyopathies in pediatrics, and the most common type that requires a heart transplant is dilated cardiomyopathy (DCM).

The main goal of a pediatric heart transplant is that infants and children should be able to do everything that their peers are able to do, including going to school and being fully active. If there are no additional health complications, many children lead active and healthy lives after a heart transplant.

Every case is different. On average, a child can live over 20 years until another transplant is required. There are many NewYork-Presbyterian patients alive today with their original donor hearts, which were transplanted over 30 years ago.

The survival rate for pediatric heart transplant patients is around 90% at one year, and 80% at five years. Approximately 50% of patients survive for more than 20 years with their original transplanted donor heart.

Before being placed on a donor list for a heart, a financial team will make sure your insurance will pay for the surgery and cover pre- and post-operative processes.

Recovery from heart surgery can take two to three weeks with pain and sedative medication administered. In many cases, a child can resume full activities one to two months after surgery.

Since the average lifespan of a donor heart is around 20 years, your child may require a second heart transplant. This can be due to inflammation (believed to be part of the rejection process) within the coronary arteries, or from heart disease or other pre-existing conditions. The average survival of a transplanted donor heart has been improving over time and may continue to do so.

There are approximately 500 pediatric heart transplants done in the United States each year.

A heart transplant is typically performed when all other medications and surgical treatments have failed. It comes with many risks, potential side effects, and the need for lifelong follow-up care and medications.

Donor hearts do grow with the recipient. Many pediatric heart transplant recipients have grown into healthy adults.

Get Care

Receive a Pediatric Heart Transplant at NewYork-Presbyterian

NewYork-Presbyterian Morgan Stanley has one of the most successful pediatric heart transplant programs in the world. Our team of experts will walk you through your treatment options. We stand ready to support you and your child through heart transplant surgery and beyond.

To learn more, contact NewYork-Presbyterian and schedule an appointment with one of our world-class pediatric cardiologists or cardiac surgery specialists.