Book Review

Surgically Shaping Children: Technology, Ethics, and the Pursuit of Normality

N Engl J Med 2007; 356:645-646February 8, 2007

Article

Surgically Shaping Children: Technology, Ethics, and the Pursuit of Normality
Edited by Erik Parens. 274 pp. Baltimore, Johns Hopkins University Press, 2006. $50. ISBN: 978-0-8018-8305-7

Most people do not question the benefits of surgeries undertaken to give children a more normal appearance. Some recognize the tension inherent in making such decisions but nevertheless surrender to the social pressures of conforming to normalcy. They feel the need to do something, even when doing so may not be clearly advantageous for the child. They tend to yield to the dubious authority of the technological imperative. For these reasons, this compilation of essays edited by Erik Parens is vitally important.

In his introduction, Parens describes the book as an exploration of the tension between the desire to have surgery performed to spare children the pain and suffering of being different and the desire to spare children the pain and suffering of being subjected to surgery. But the book does much more. It explains the philosophical, psychological, and medical reasons why this tension exists, and it challenges the assumptions that embroil us in that tension. It provides an amazing wealth of practical advice that will help readers understand, confront, and manage the various forces that create the tension. Furthermore, it should give readers both the courage to resist seductive influences and the inspiration to arrive at decisions less likely to lead to remorse, disruption of family ties, or disappointment with unmet expectations.

Two aspects of the book in particular contribute to its success in presenting a balanced perspective on the general issue of “surgically shaping children.” First, the book focuses on three conditions for which normalizing surgery is widely practiced, each giving rise to a different level of controversy. From most controversial to least, these conditions are ambiguous genitalia, dwarfism (achondroplasia), and cleft lip and palate. Through analysis of the justifications for surgery to repair a cleft lip and palate and the moral failings attending most operations on infant genitalia (and associated practices), the contributors develop useful guidelines for decision making. The other aspect of the book that most contributes to its usefulness is its inclusion of many different voices — those of scholars and professionals from different disciplines (including bioethics, medicine, social work, philosophy, psychology, and law), of people with opposing viewpoints, and of people affected by one of the three conditions (some who have been surgically treated and some who have not).

All the chapters are well written and engaging. The positioning of the personal accounts at the front of the book serves not only to engage the reader but also to bring to the fore hitherto neglected issues: How have our surgical practices affected those who have been subjected to them? Is conformity to social ideas about normality of more value than living one's life differently but authentically? What might we be sacrificing as a result of our desires to protect children from the reactions of those who are intolerant of differences? If parents by nature want to protect, and surgeons by nature want to fix, we need to hear from those with first-hand experience of what is to be gained and lost, because they are the truest authorities.

Parents facing grueling decisions about surgical interventions for their children will find great solace in this book. Its purpose is not to preach but to encourage reflection and facilitate informed consent. It illuminates subtle dangers: the danger that the decision to obtain surgery can send the message that the child falls short of parents' expectations, the danger that decisions made without the participation of children may alienate them from their parents, and the danger that expectations about the ultimate success or helpfulness of the surgery may be overestimated. Parents can learn to ask important questions, to better prepare their children for the world, to master their own vulnerabilities, and to develop the strength to oppose unexamined assumptions. In the end, they will be reassured that the most important determinant of their child's happiness and well-being lies well within their own powers of unconditional love.

Sharon E. Sytsma, Ph.D.
Northern Illinois University, DeKalb, IL 60115
ssytsma@niu.edu