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 a person who has been declared clinically brain dead.

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 a 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 situation is presented at a multidisciplinary transplant meeting. A group decision is made about next steps. Not every patient who may need a transplant is for a good fit for transplantation. Patients are not listed for transplantation for many reasons. They can be:

  • Patient / family desire
  • 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. 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. We also want to make the quality of life the best it can be. Transplantation is not a cure.

The common causes of end-stage heart disease causing a transplant in children include:

  • Cardiomyopathy -- a slow decrease of the function of the heart muscle
  • Congenital heart defects that are not able to be corrected by surgery
  • Palliation

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 performed in pediatric patients each year.

Waitlist time for transplantation varies depending on a patient’s weight, blood type, and waiting status. Typically, a patient would wait weeks to months before a donor offer is available. It is common to wait for over a year.

Once an appropriate donor heart is available, a patient has two to four hours to get to the hospital and get ready for surgery.

Description of Heart Transplantation

Once a patient has been accepted for transplantation, they are put on a nationwide list. Based on their clinical status, blood type, size, and time on the list, donor hearts are offered to a transplant center for a certain patient.

Once a donor organ is accepted, a team travels to the donor hospital to get the heart. The heart is cooled with a special solution. The heart is placed in cold saline and transported in an ice cooler 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 to14-day hospital stay. This can vary depending on a patient’s health.

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.

Passing away early is less than five percent for primary heart transplant in patients in good pre-operative condition.

Long-term survival varies. Long term survival depends on a patient’s health status before transplant.

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

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

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 on 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 on transplantation. The patient will 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.


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

Survival rates have continued to improve.

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 these 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 described 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, however, 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.

The overall survival for orthotopic cardiac transplantation is currently around 90 percent at one year and 80 percent at five years. About 50% of transplant recipients survive more than 15 years.

Last Updated 04/2022

Reviewed By Shelly Stark, MSN, APRN, CNP

Locations Close to Home

Learn more about visiting Cincinnati Children's.

The Heart Institute has more than 30 outpatient heart locations in Ohio, Kentucky and Indiana.

Find a Location