A Death Retold: Jesica Santillan, the Bungled Transplant, and Paradoxes of Medical Citizenship (review)

Jesica Santillan was a Mexican girl who suffered from longstanding restrictive cardiomyopathy, a chronic cardiac disease. She and her family moved to the United States in 2000 as undocumented Mexican immigrants. Her medical condition worsened, and at the age of seventeen, on 7 February 2003, Ms. Santillan received a heart/lung transplant at Duke University Medical Center. Unfortunately, she was blood type O, but her new organs mistakenly came from a donor who was blood type A. Ms. Santillan suffered hyperacute rejection, then received another (properly matched) transplant and continued to do poorly.

After a stormy clinical course, her ventilator was turned off on 22 February and she was declared dead. This tragic series of events was played out largely in public view. Coming as it did in the midst of what was already a national debate over medical errors and medical malpractice, illegal immigration, and United Network for Organ Sharing (UNOS) policies for allocating scarce solid organs for transplantation, Ms. Santillan's death provoked heated debate. Commentators raised a host of questions, including questions about how such a mistake could have been made at one of America's premier medical centers, whether the fault lay with individual caregivers or with the medical system, why an undocumented alien was in line to receive not one but two sets of scarce organs (and whether the quest for those organs was one reason for her coming to the U.S. at all), and whether the second transplant was obtained by inappropriately "jumping" Ms. Santillan ahead of other potential recipients.

This excellent collection of sixteen essays explores the ways in which the story of Jesica Santillan has been told and retold—an investigation that reflects one of the book title's many meanings. Some authors are best known for their work in history, while others are lawyers, ethicists, anthropologists, philosophers, sociologists, communications scholars, and clinicians. Some authors consider how this tale could be made to fit preformed narratives; others explore how media representations were created. An interesting subtext in many of the essays addresses the changing nature of the American South. While the events described are still relatively recent, the issues discussed are ones that will be of broad interest to medical historians, especially to those who study contemporary medical practice.

Many of the essays look to historical events to make sense of the case at hand. Barron Lerner draws connections with the 1984 death of Libby Zion, noting that after the deaths of both Ms. Zion and Ms. Santillan, a prominent, older male spokesperson took the lead in angrily questioning a powerful medical institution about the death of a young, silenced woman. Starting with a problematic heart transplant in 1968, Susan Lederer analyzes race and solid-organ transplantation in the United States over the past half century. Jed Adam Gross provides some astute insights into the historical roots of the current UNOS system. Several other chapters use historical arguments in their analysis.

As one would expect with such a diverse group of essayists, the selections vary in conceptual approach, and there is more than a little bit of redundancy from essay to essay. The collection can be used fruitfully in a classroom setting for both graduate and professional school.