Why Would a Child Need a Heart Transplant?

Orthotopic cardiac transplantation is the process of taking out a person's failing heart and replacing it with an appropriate heart from another person. Orthotopic means removing the patient’s original heart and placing the donor heart in its place.

Potential Heart Transplant Candidate

Potential heart transplant recipients are identified by their surgeon or cardiologist. The patient and family are given the option of transplantation. They are taught about the process and care involved.

The evaluation process involves blood work, imaging studies like ultrasounds, and evaluation of heart pressures and function during cardiac catheterization. A medical evaluation and evaluation of the patient and their family's social support system will be reviewed.

If the patient, family and doctor agree, the patient’s case is presented at a multidisciplinary transplant meeting. A group decision is made about the next steps. Not every patient who may need a transplant is a good fit for transplantation. Sometimes there are other medical or surgical interventions that can be attempted before transplantation. Patients are not listed for transplantation for many reasons, including:

  • Patient / family does not want a transplant
  • Medical problems that do not support a transplant
    • Some examples include (but are not limited to):
      • Kidney disease
      • Active cancer
      • Infection
  • Other problems

Heart transplantation is a last resort for patients with end-stage heart disease who have no other surgical or medical therapies available.

People listed for heart transplantation are expected to live less than one year without undergoing transplant or requiring significant additional support (for example, needing IV medications in the hospital or a ventricular assist device). These patients often have a lot of activity limitations.

The goal of heart transplantation is for the patient to go back to normal activity with the least number of limitations and to make the quality of life the best it can be. Heart transplantation is not a cure, though.

The common causes of end-stage heart disease leading to needing a transplant in children include:

  • Cardiomyopathy — a slow decrease of the function of the heart muscle
  • Congenital (from birth) heart defects that are not able to be corrected by surgery or are still causing problems after surgery

In adults, ischemic heart disease from a previous heart attack or coronary artery disease is the most common reason for heart transplantation.

Heart Transplant Process

Over 400 heart transplants are done in pediatric patients each year. Once a patient has been accepted for transplantation, they are put on a nationwide list. Waitlist time for transplantation varies depending on patient-specific factors (weight, blood type, etc.). Typically, a patient will wait weeks to months before a donor offer is available. It is common to wait for over a year or longer depending on the patient’s status. Based on their clinical status, blood type, size, time on the list and location, donor hearts are offered to a transplant center for a certain patient.

Description of Heart Transplantation

Once a donor organ is accepted, the family is notified and agrees to proceed with transplantation. A patient who is not in the hospital has two to four hours to get to the hospital. A team travels to the donor hospital to get the heart. The heart is removed from the donor and transported back to the hospital where the patient is waiting.

Once the team getting the donor heart has seen the donor heart, the patient’s chest is opened. They are placed on the heart-lung machine (cardiopulmonary bypass). The failing heart is removed. The new donor heart is stitched into place.

For patients who have not had surgery before, the transplant surgery typically takes about six to eight hours. Post-operative recovery typically involves a 10- to 14-day hospital stay. This can vary depending on a patient’s health and previous cardiac surgeries.

Risks and Complications

The immediate risks of transplantation include the usual risks of open-heart surgery such as bleeding, stroke, abnormal heart rhythms, kidney problems and infection. The risks may be increased based on the patient's condition before surgery.

Less than 5% of patients with good pre-operative condition for primary heart transplantation die soon after transplant. Long-term survival varies but is still impacted by a patient's pre-transplant health.

The most frequent early complications include renal (kidney) dysfunction, infection and bleeding.

Temporary right ventricular dysfunction may occur immediately after surgery. This may be caused by elevated pressures in the lungs (pulmonary hypertension) or loss of oxygen to the heart (ischemic). This normally resolves with time but may need medications to improve.

Preparing Your Child

Patients being evaluated for transplantation will have an echocardiogram and usually a cardiac catheterization. There will also be many blood tests and meetings with multiple transplant team members.

Patients waiting for transplantation may be on blood thinners (anticoagulants) to prevent clots from forming in the heart. They may also be on medications to prevent dangerous heart rhythms from occurring. These are more frequent in failing hearts.

If the lung or heart function is too poor on its own, patients may need to remain on intravenous (IV) medications while waiting for transplantation. The patient will most commonly need to stay in the hospital for this period.

Mechanical circulatory support, or a ventricular assist device (VAD), may also be needed.

Education is given to all patients and their families during the evaluation process.

Success

Heart transplantation is a palliative (therapeutic) and not a curative operation. Most patients return to good functional status, but transplanted hearts do not last as long as the heart with which you were born.

Survival rates have continued to improve. About 50% of heart transplant recipients survive more than 15 years.

Patients must stay on multiple medications many times a day for the rest of their lives. One type of medication, immunosuppressants, must be taken forever to help prevent rejection. Some of these medications can have significant side effects, needing other medicines for treatment. In the first several months post-transplant, it is not unusual for a heart transplant recipient to be on 10 to 15 medicines given multiple times a day. It is critical that the patient follows the strict medicine schedule to avoid complications of transplantation.

Transplant patients are at risk for infection and the development of lymphoproliferative disorders (a form of cancer) because of their medications. Rejection may also occur. The dosage of medicines must be changed at times based on blood tests, infection or cancer, or rejection. Close follow-up with the transplant team is needed. It is not unusual for patients to come back to the hospital often for these assessments. Patients who have received a transplant must be followed in a medical center with heart transplant cardiologists.

An aggressive form of coronary artery disease has also been seen in transplanted hearts that may represent a form of chronic rejection. This is the most common reason for re-transplantation.

Patients may undergo re-transplantation if the transplanted heart starts to fail. Repeat transplants are possible, but they do not always do as well as the first donor heart. If a re-transplant is needed, the patient and family must have another evaluation. Some patients may not qualify for a re-transplant due to medical or social reasons.

Last Updated 04/2025

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