Synopses & Reviews
A fascinating story of medical experimentation, parental love, and the extreme measures taken to make children fit within ?the norm.?
Most people rarely think about their height beyond a little wishing and hoping. But for the parents of children who are ridiculed by their peers for being extraordinarily tall or extraordinarily short, height can cause great anguish. For decades, the medical establishment has responded to these worries by prescribing controversial treatments and therapies for children who fall outside of the ?normal? height range. While some have benefited, many have suffered from devastating side effects.
In this riveting book, Susan Cohen and Christine Cosgrove provide a voice for the parents, doctors, scientists, and pharmaceutical companies involved in these experimental treatments. They also tell the story of the boys and girls themselves, many of them now grown, who were subjected to a wide range of non-FDA-approved medical procedures. These treatments? which consisted of extreme doses of estrogen, pituitary glands taken from both animals and human cadavers, and testosterone injections?often had disastrous side effects.
Who is to say how tall is too tall, and how short is too short? For many of the individuals represented in this book, the answers have been clear?and they are grateful to the medical industry for improving upon nature. For others, left in the wake of this same science, the answers are fueled by tragic regret. The authors explore the dueling motives behind these procedures? with parents desperate to help their children ?fit in? and doctors and scientists hungry for scientific breakthroughs. Combining extensive research and in-depth interviews, Normal at Any Cost is the first book to place a human face on this complex and ethically charged medical history.
"Science journalist Cohen and Cosgrove, a WebMD contributor, offer an emotionally charged indictment of the medical-pharmaceutical complex centered on efforts to control height (making boys taller, girls shorter) in otherwise normal, healthy children. Reviewing five decades of such efforts, such as in the 1950s with the administration of estrogen to stunt tall girls' growth, the authors take to task pediatric endocrinologists, drug companies and the parents who bring their children for treatment. This history is meant as a cautionary tale, and Cohen and Cosgrove raise all the right questions: when do we cross the line from treating disease to 'satisfying desires for perfection'? can the exorbitant cost of growth hormone therapy be justified in an otherwise inadequate health system? do drug companies distort the practice of medicine? does government adequately protect the public? Because it can take decades for the ill effects of treatment to emerge, this account can only raise questions about possible threats from current practices. Fortunately, the treatments much of the book is devoted to are no longer in use." Publishers Weekly (Copyright Reed Business Information, Inc.)
Cohen and Cosgrove pull no punches. Medical intervention into height adjustment is nothing more than a futures gamble. Physicians, pharmaceutical manufacturers, and others who should know freely admit there is no way, except in rare instances, of predicting with any degree of certainty how tall or short a child will be at full maturity. So why, then, the mad scramble by some parents to intervene, hoping that medicating their children will assure gender-appropriate stature? ThatÆs another thing the coauthors make clear. There is a great deal of money to be made playing on the fears of moms and dads of too-tall girls and too- short boysùby recent estimates, about $50,000 per inch, without guaranteed success. Furthermore, there has been no scientific study of the long-term effects of the treatments. Some delay puberty. Some speed it up. Some may have no desired effect whatsoever. Eye-opening reading for anyone considering these interventions.
Two science journalists examine the fascinating history of medical science's flawed attempts to manipulate height and the ethics involved. In the first section, set primarily in the 1950s and 1960s, they discuss middle-class families who were urged to try to reduce their daughters' height before it was too late for them to be "successful adults." The tall girls were given estrogens to send them prematurely into puberty and force their growth plates to close. In the second half, the authors focus on the use of human-growth hormone to increase the height of naturally short children. Before synthetic-growth hormone was developed, there was a painstaking procedure for extracting it from cadaver pituitary glands. This defective process led to the spread of neurological diseases as horrible as Creutzfeldt-Jakob disease (the human version of mad cow). Interestingly, neither the growth hormone nor the estrogen resulted in systematically proven results. This startling look at medical ethics and history has implications for the future of "human improvement" therapies; recommended for large academic and public libraries.
Sobering story of what parents, and doctors, will do to help short and tall children become "normal."
In the 1930s and '40s, popular magazines and newspaper columnists warned that tallness could be a handicap for a girl and shortness could turn boys into sissies or young Napoleons who faced bias in the job market. Such societal views prompted parents of children outside the height norms to turn to the controversial therapies detailed in this information-packed book. Medical journalists Cohen and Cosgrove begin with the FDA's approval in 1941 of diethylstilbestrol (DES), a synthetic form of estrogen administered at Massachusetts General and other medical centers to inhibit growth in tall girls. The drug encouraged early puberty and had many side effects; its use to "treat" an inherited trait (height) was immediately controversial. Nonetheless, DES in large doses slowed growth and quelled parental anxieties, which later dissipated as tallness in females became more socially acceptable, and fewer girls received estrogen treatment. In the '50s, Yale chemist Alfred Wilhelmi and others began using anabolic steroids, which include synthetic testosterone, to spur growth in short boys. Through the stories of patients and scientists in the United States and abroad, the authors examine the rise of the vast growth-hormone industry, which skyrocketed in the '80s when Genentech developed a biosynthetic hormone. By the '90s, many children whose bodies produced growth hormones were receiving still more by prescription, despite the fact that the long- term safety and effectiveness of the drugs remained uncertain. Meanwhile, complications continued to surface in women who took DES years ago. The authors question the motives of all the key playersùparents, doctors, drug companiesùand note that there have been many more incentives to encourage treatment with hormones than to study the drugs' long-term effects. "Once a treatment exists, its existence becomes a reason to use it," they lament.
Solid reporting on the reckless use of medical technology for socially dubious ends.
ù Kirkus Reviews
Cohen and Cosgrove present a fascinating story of medical experimentation, parental love, and the extreme measures taken to make children fit within the normal height range.
About the Author
A recipient of the Science in Society Award from the National Association of Science Writers, SUSAN COHEN
has written extensively on bioethical issues.
CHRISTINE COSGROVE is a medical journalist whose work has appeared in numerous newspapers and magazines around the country. A frequent contributor to WebMD, she was treated with DES (a growth-stunting drug) as a child and now stands five feet eleven inches.
Table of Contents
Normal At Any Cost Introduction
Part 1. drug turns young amazons into beauties
Chapter 1. "Tallness Can Be a Real Handicap for a Girl"
Chapter 2. Playing God with Hormones
Chapter 3. Two Girls, Two Continents
Part 2. helping the dwarfed children
Chapter 4. "A Gland Lost Is a Gland Wasted"
Chapter 5. "No Patient Seems to Have Caught Anything"
Chapter 6. "Soon. Very Soon. . ."
Part 3. to market, to market. . .
Chapter 7. "Only Genentech Is Not in Mourning"
Chapter 8. Dear Parent. . .
Chapter 9. "Never Before in the History of Medicine"
Part 4. reckonings
Chapter 10. Absence of Evidence Is Not Evidence of Absence
Chapter 11. Friendly Fire
Part 5. $35,000 an inchand growing
Chapter 12. A Disease Is Born
Chapter 13. Now What?
Conclusion: A New Normal?