Pediatric Heart Transplantation:
A Practical Parent Guide

PART 2: OVERVIEW

The first heart transplants were performed in adults over 30 years ago.  With the development of medications that could prevent organ rejection during the 1980’s, heart transplantation became a standard treatment option for children facing the most advanced forms of pediatric heart disease.  Today, many centers around the world perform heart transplants on both adults and children when no other treatment options are available.

Here at Children’s Hospital Boston, we performed our first pediatric heart transplant in 1986.  As of December 2006, over 160 heart transplants have been performed.  Between 12-14 heart transplants are performed each year at Children’s Hospital, Boston.  Nationally, approximately 360 children receive heart transplants each year.  One-year and three-year survival rates are 86% and 78% respectively.  The longer-term outlook for heart transplant patients is unknown, but hopeful.  Many of our early pediatric patients have now survived 10-15 years with their transplants.  A tremendous amount of transplantation research continues to be done in a field that has already seen incredible advances in the last 20 years.  Work is being done on improved immunosuppressive drugs as well as on better and easier ways to diagnose the rejection of transplanted hearts.  Our procedures and treatment will continue to change and improve as new information is learned.

We have found that a heart transplant generally improves the overall quality of life for children and their families.  It allows children to feel well and to participate in age appropriate activities.  It has helped many children get back to the normal routines and tasks involved in growing up.  At the same time, it is important to remember that transplantation is not a cure.  Children and their families are trading a life limiting heart disease for lifelong medications, close medical follow-up, invasive interventions and the side effects of transplantation medications. 

We want you to join us as a member of the heart transplantation team.  This booklet was written as a starting point to help you understand the transplantation process.  The goal is to introduce you to important ideas such as immunosuppression, rejection, and infection.  Issues unique to children such as growth and development, immunizations, emotional responses and the impact of a heart transplant on your family will also be discussed.

We understand that there is a lot of information in this booklet.  We encourage you to read one section at a time and take things step by step, asking questions as they arise.  Everything in this booklet will be discussed with you in the clinic or during your hospital stay.