From the Introduction

In 1990 at the age of 42 years, I was an ambitious young physician. I made a deliberate mid-career decision to devote the majority of my work to caring for dying children. At first glance, that choice may seem unbearably onerous, especially for a pediatrician. The death of a child is often described as the most devastating loss a person can face. Yet when the opportunity arose to help build a pediatric lung transplantation program at an outstanding children’s hospital, I embraced it without hesitation. Transplantation exists for patients whose lives are threatened by the failure of a single vital organ. It embodies both the promise of survival and the persistent risk of loss; death remains a possibility on either side of the actual transplant operation. The stories in this book are shaped by that tension — the interplay of uncertainty, hope, mortality, and grief…

The goals of my writing this book are sundry. First, I want to inform my readers about the interesting history and biology of organ transplantation. Second, I will describe the unique biologic and logistical challenges of pediatric lung transplantation. Third, I want to describe the complex system by which pediatric patients get referred to a lung transplant center, how they are evaluated, and how the national system of organ procurement and distribution provides for donor organs. Fourth, I will describe the phases of transplantation and how they affect and put great demands on patients, their families, and the transplant team. Then, fifth, I want to describe the roles and stories of various members of the transplant team, a perspective omitted by other transplant physician authors. Sixth, and most importantly, occupying the largest portion of the book, I want to describe the experiences of individual patients and families and the themes that they illustrate in the vast panoply of disappointments, miracles, and fulfillments that I have witnessed. Lastly, I want to provide a personal perspective on what this work has meant to me and what it has taught my colleagues and me about medicine and life itself…

I have witnessed improvements in the practice of choosing candidates for transplantation, preparing them for transplantation, operating on them, and providing post-operative care before and after transplant over the decades. It is likely that further improvement in the future will lead to more enduring success reflected both in the length of survival and in the quality of life of lung transplant recipients. I am a born optimist and hope has been a major theme in my life and in this book. I remain deeply grateful to have had the opportunity to do this work.