For the month of April, PCHA has been focusing on the theme of National Donate Life Month. In the 5th post of our series, Dr. William T. Mahle shares a physician’s perspective on the miracle of organ donation.
Some children, including those with congenital heart disease, can develop progressive weakness of the heart. This results in heart failure. Heart failure is usually evident by the inability of the heart to meet the body’s demands. For children, this might be seen in difficulty keeping up with their peers or in its more severe form, difficulties with breathing or feeding. A number of medicines may help in these conditions. However, in some cases, the heart failure is so severe that a heart transplant will need to be considered.
A heart transplant is an extraordinary miracle of science. This measure is only undertaken when there are no other good options. This is because there is only a limited number of hearts available for children. Moreover, immunosuppression medication, which helps turn down the natural immune system, has some limitations. With regular use of immunosuppression, rejection of the heart can be avoided. However, these medicines can increase infections and lead to other complications such as diabetes and cancer. Therefore, while heart transplant provides a lifesaving option for some families, and has continued to improve since its first introduction in 1967, it should truly only be considered when surgical and medical therapies are exhausted.
In evaluating a child for a heart transplant, the transplant team first and foremost asks if it is the best option for the child. In addition, there are some other medical conditions that may prevent the safe use of a heart transplant. These might include severe damage to other organs such as the kidney or liver. Therefore, a complete heart transplant evaluation is done on every child who is being considered for this procedure. Over the course of one or more days the family meets with a number of specialists including social workers and heart transplant coordinators to make sure they fully understand the transplant process and that it is their desire to proceed with transplant listing. If the medical team and the family both agree to a heart transplant listing, the child is placed on a national wait list.
Children are prioritized in the order of how great their risk might be of deterioration before a heart becomes available. In the U.S. there are 3 listing stages: levels 1A, 1B, and 2. Fortunately, with many advances in medicine and surgery, the great majority of children listed for heart transplant are able to survive and receive a heart transplant and do well afterwards.
We have always stressed to the family how important it is to acknowledge the sacrifice that the donor family has made. Typically in the setting of some unexpected tragedy, the family of a child or young adult must decide whether to donate organs. In that decision they have placed a hope that something good might somehow come out of a tragedy. This miracle is never lost on the heart transplant recipient or their family. They understand the enormity of this life saving procedure. Care of a transplanted heart requires strict adherence to a daily medication regimen and medical follow-up. Fortunately, with continued advancements in science, this has allowed many children to graduate from high school and college and go on to find work and pursue other dreams of adulthood. While the barriers to successful long-term survival after a heart transplant still exist, there are many efforts to improve the outcome for these patients. Solid organ transplant is among the greatest advances of modern medicine and organ donation month gives us an opportunity to reflect on the sacrifices that are necessary to make this possible.
Dr. William T. Mahle is a pediatric cardiologist currently serving as Medical Director, Heart Transplant Program and Medical Director, Clinical Research at Children’s Healthcare of Atlanta and Marcus Professor of Pediatrics at Emory University School of Medicine in Atlanta, Georgia. Dr. Mahle is committed to research in the field of pediatric cardiology and congenital heart disease. His academic interests have focused on perioperative care with a particular interest in neurodevelopmental outcomes. He serves on several national committees including National Heart Lung and Blood Institute (NHLBI), Pediatric Heart Network (PHN), American Heart Association’s Cardiovascular Disease in the Young (CVDY), and United Network Organ Sharing (UNOS). Dr. Mahle is a member of the Pediatric Congenital Heart Association’s Medical Advisory Board.