Heart Transplants in Children

Orthotopic cardiac transplantation is the process of removing a person's failing heart and replacing it with a suitable heart from a person who has been declared clinically brain dead.

Orthotopic refers to removing the patient original heart and placing the donor heart in its place. It contrasts the procedure from "heterotopic" transplantation, which is leaving the patient’s original heart but connecting the donor heart as well.

Potential Heart Transplant Candidate

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

The evaluation process involves blood work, further studies of heart pressures and function, if needed, an indepth medical evaluation, and evaluation of the patient and the family's social situation and support system.

If all are in agreement, the patient is presented at a multidisciplinary transplant meeting and a group decision is made. Not every patient who may need a transplant is acceptable for transplantation. Reasons that some patients are not listed for transplantation include:

  • Patient / family desire
  • Medical contraindications
  • Other contraindications

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

Generally, people listed for heart transplantation have a life expectancy of less than one year. Additionally, these patients often have significant limitations of their activity and lifestyle prior to transplantation.

The goal of heart transplantation is to return the patient to a state of functionality with the least amount of limitations and to optimize quality of life.

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

  • Cardiomyopathy -- a progressive deterioration of the function of the heart muscle
  • Congenital heart defects that are not amenable to further correction
  • 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, according to the International Society for Heart and Lung Transplantation.

Wait-list time for transplantation varies depending on their size, blood type and waiting status. Typically a patient would wait weeks to months before an appropriate donor offer is available. It is not uncommon to wait for over a year.

Once a suitable donor heart is available, a patient generally has two to four hours to get to the hospital and be prepared for surgery.

Description of Heart Transplantation

Once a patient has been accepted for transplantation, he or she is placed on a nationwide list. Based on the clinical status, blood type, size, and time on the list, donor hearts are offered to a transplant center for a particular patient.

Once a donor organ is accepted, a team travels to the donor hospital to retrieve 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 recipient is waiting.

Once the team retrieving the donor heart has visualized the donor heart the recipient’s chest is opened and they are placed on a heart-lung machine (cardiopulmonary bypass). The failing heart is removed and the new donor heart is sutured into place.

For patients who have not had prior surgery, the transplant operation typically takes about six to eight hours. Post-operative recovery typically involves a 10- to 14-day hospital stay but varies dependent on a patient’s health prior to transplant.

Risks and Complications

The immediate risks of transplantation include the usual risks of open-heart surgery. The risks may be increased based on the patient's pre-operative condition.

Acute graft failure either from pre-formed antibodies (rejection) or from primary graft dysfunction is quite rare in the current era.

Early mortality is less than 5 percent for primary transplants in patients in good pre-operative condition.

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

Temporary right ventricular dysfunction may occur in the immediate post-operative period. This may be caused by elevated pressures in the lungs of the recipient or ischemic effects of organ procurement. This normally resolves with time but may require support with IV or inhaled medications.

Preparing Your Child

Patients undergoing evaluation for transplantation will have an echocardiogram and usually a cardiac catheterization along with multiple blood tests and meeting with multiple transplant team members.

Patients awaiting transplantation may be on anticoagulants to prevent clots from forming in the heart. They may also be on medications to prevent dangerous rhythms from occurring, which are more frequent in failing hearts.

If the pulmonary resistance is significantly elevated or the heart function is too poor on its own, patients may need to remain on intravenous (IV) medications while awaiting transplantation. This most commonly requires the patient to stay in the hospital.

Mechanical circulatory support, or a ventricular assist device (VAD), may also be employed to support a patient awaiting transplantation.

Literature on transplantation and face to face education is provided to all patients and their families during the evaluation process.

Success

Heart transplantation should be considered a palliative and not a curative operation. While most patients return to good functional status, transplanted hearts do not last as long as a normal native heart.

Survival rates have continued to improve with experience, better techniques and medications, and improved rejection surveillance and immunosuppression.

Patients must remain on multiple medications for the rest of their lives. One type of medication, immunosuppressants, must be taken forever to help prevent against rejection. Some of these medications can have significant side effects, requiring 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 adheres strictly to these regimens to avoid the many potential and serious 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 has to be changed at times based on blood tests, evidence of infection or cancer, or evidence of rejection. Close follow-up with the transplant team and doctors is needed and it is not unusual for patients to come back to the hospital often for these assessments.

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 retransplantation 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 felt to be needed the patient and family must undergo another evaluation and some patients may not qualify for a retransplant 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 percent of transplant recipients make it out more than 15 years.

Last Updated 06/2020

Reviewed By Shelly Stark, MSN, APRN, CNP

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