Any discussion of the psychiatric aspects of pediatric transplantation must begin with a brief history of the field of pediatric transplantation itself. Both solid organ and bone marrow transplant procedures have made remarkable progress over the last 30 to 40 years, with pediatric technological expertise keeping pace with the rapid development of new and better means of keeping transplant patients healthy and highly functional. In fact, if one examines the relatively high morbidity and mortality rate of all forms of transplantation 30 years ago compared to the state of the art today, it perhaps makes sense that interest in the psychosocial and psychiatric wellbeing of transplant patients is a relatively new and still understudied aspect of the field.

The first solid organ transplant procedures in children involved cardiac transplant attempts in infants during the late 1960s. These patients lived at most a few days, and although physicians and scientists tried valiantly to understand the limits of these potentially life-saving procedures, the results were plagued by infection, organ failure, and graft rejection. The introduction of cyclosporine as an immunosuppressing agent in 1980 marked perhaps the beginning of a fundamental change in the outcome of these procedures. Although powerful and increasingly specific antibiotic and physiologic medications were vastly improving outcomes, medications such as cyclosporine made possible the resistance to graft rejection that paved the way for a substantially more normal existence for transplant recipients. Patients lived longer, fared substantially better, and transplant services became gradually more interested in the psychosocial development of the younger patients whose lives had been saved, but permanently altered, inherent in the transplant itself and in the treatment of subsequent complications makes the medical training of the consultation-liason psychiatrist ideally suited for this service.

In a similar fashion, bone marrow transplantation began as a desperate attempt to prevent the development of otherwise fatal conditions, most commonly hematological malignancies. Since its somewhat rocky beginnings, great strides have been made in this difficult and unique procedure. While the first bone marrow transplant procedures took place in the late 1960s, unlike solid organ transplant procedures, bone marrow transplantation had its genesis in the pediatric population. In addition, perhaps because of the severe isolation that very young patients must endure during bone marrow transplantation, attention to the psychosocial needs of these patients received greater initial emphasis than did solid organ procedures on similar-age patients. However, for both solid organ and bone marrow transplant procedures, transplant services are increasingly recognizing the need for participation by, and integration with, pediatric mental health specialists. In addition to assisting transplant services with decisions regarding suitability and preparation of the patient and family for the imminent surgery, problems such as medication compliance, maintaining a normal developmental trajectory, the onset and treatment of emerging psychiatric disorders, and the management of psychological aspects of the still frequent medical crises all involve active participation of child mental health services. Furthermore, our experience suggests that the understanding of the medical challenges inherent in the procedure itself and in the treatment of subsequent complications make the physician training of the consultation-liaison child psychiatrist ideally suited for this service.

All of these developments gave rise to the somewhat new field of transplant psychiatry. Early consultants such as Owen Surman at Massachusetts General Hospital and Margaret Stuber at UCLA paved the way for greater acceptance of the psychiatric needs of solid organ and bone marrow transplant recipients. Interestingly, as with other significant, chronic, and severe medical conditions, there is some evidence that attention to the psychiatric concerns of transplant patients became more palatable to medical and surgical services as the overall capacity to keep these patients healthy continued to improve (1).

This chapter will summarize the psychiatric aspects of pediatric solid organ and bone marrow transplant patients. We will focus on the evaluation and preparation of patients and their families for the procedure itself, on the management of the patient and family during and immediately following the procedure, and on the long-term management of these patients as they move forward in their lives. In many ways, pediatric transplant psychiatry epitomizes the fundamental aspects of good consultation-liaison work. The principal challenge for the transplant psychiatrist is achieving balance in the dual role of helping the patient and family maintain a normal developmental trajectory while at the same time assisting the transplant team with the often charged and intense emotions that accompany working with these young patients.

The child and adolescent psychiatrist plays an important and complex role in the evaluation of the child who is approaching transplantation. Initially, the psychiatrist is responsible for conducting a thorough psychiatric evaluation of the patient and family. In addition, the psychiatrist must be familiar with the medical problems facing the patient, both before and after surgery, in order to educate the family about the risks and benefits or transplantation and to assess the family’s ability to provide informed consent. The psychiatrist also acts as a liaison between the family and the transplant team. The family will need support, direction, and clarification of the transplant team’s expectations and concerns. The team in turn will also need support, direction, and sometimes interpretation of the family’s behavior. The psychiatrist may also serve to focus the team’s attention on ethical conflicts that may arise, particularly those that involve directed living donation by a related or unrelated donor.