Pediatric Heart Transplantation

In pediatrics, the most common indication for transplant is cardiomyopathy, which is an inherent problem with the way that the heart muscle functions. There are 3 main forms: dilated cardiomyopathy (most common in pediatrics), hypertrophic cardiomyopathy (rarely requires transplant), and restrictive cardiomyopathy. The second most common indication for a heart transplant in children is complex congenital heart disease when either the heart muscle fails or no other corrective or palliative surgery will help improve the child’s health.

The main goal of heart transplantation in pediatrics is for babies, children, and adolescents to be able to do everything that their peers are doing. Survivors of heart transplants attend school and college, play sports, travel the world, and eventually go on to raise families of their own.

Recent national data from the Scientific Registry of Transplant Recipients (SRTR) reports survival after pediatric heart transplantation of 100% at 1-month and 96.2% at 1-year at NewYork-Presbyterian Morgan Stanley Children’s Hospital, compared with the national average of 97.6% and 91.4%, respectively.

Before being placed on the waiting list for a donor heart, a thorough financial evaluation is conducted, and as part of that, the financial team will make sure the insurance will pay for the transplantation as well as the pre-and post-transplant process.

The recovery after heart transplantation in pediatrics is quite variable and mostly related to the degree of illness and level of deconditioning leading up to the surgery. The operation includes a sternotomy, which is a surgical opening of the breastbone. Recovery from the surgery itself usually takes 1-2 weeks and pain and sedative medications are utilized to treat both pain and anxiety in patients. In many cases, children can resume full activities between 1 and 2 months after the surgery.

Each child’s course is different. According to the literature, the average lifespan of a donor heart transplanted into a child is over 20 years before they might need another transplant. However, this number has been increasing over time due to research, improvements in immunosuppression protocols, and surveillance and treatment of graft rejection. There are many NYP patients alive today with their original transplanted hearts from over 30 years ago.

The main reason for the need for another transplant in patients who underwent pediatric heart transplantation is coronary vasculopathy, which is the development of disease within the coronary arteries. This is thought to be due to inflammation as part of a rejection process but is not completely understood. The other main reason is not taking the antirejection medications as instructed. This can cause episodes of rejection and lead to earlier coronary disease.

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

The main goal of pediatric heart transplantation is for babies, children, and adolescents to be able to live a normal life and do everything that their peers can do. However, in order to make this possible, patients need to take immunosuppression medications regularly, most often on a twice-daily basis. In addition to the rejection of the donor heart, associated risks of transplantation include side effects from the immunosuppressive medications such as infections and tumors. Therefore, heart transplantation in pediatrics is utilized as a last resort for end-stage heart failure when no other medications or surgery can restore the child to health.

When the procedure was first developed, there were a lot of unknowns, which included whether the transplanted donor heart would grow with the recipient. Fortunately, donor hearts do grow with the recipient. Many pediatric heart transplant recipients have grown to become flourishing adults.