Monday, November 06, 2006
Kid Too Big? We've Got Drugs for That
BY ADRIANE FUGH-BERMAN

Using drugs to keep a disabled child a convenient size sets a new low in social control via doctors. A recent report describes the “treatment” of a profoundly disabled six-year-old girl with estrogen in order to stunt her growth and keep her small. The child, who functions at an infantile level, was also subjected to a hysterectomy to ensure a menses-free future.

Hormonally suppressing weedy growth in children isn’t, unfortunately, new. The practice has been used since the 1950s to reduce adult height in tall girls. During puberty, the growing center in bones shuts down, causing leg bones, and the person who owns them, to stop growing. This process, called epiphyseal fusion, is triggered by hormonal changes. Administering high-dose estrogen around the time of puberty also stops bone growth. There’s no medical reason to do such a thing; the prevailing rationale seemed to be that tall women were considered less marriageable. (As if a professional basketball career couldn’t compensate for having to wear flats on dates.)

Although it was more common from the 1960s to the 1980s, estrogen for adult height reduction continues today. A 2002 publication found that 23% of 411 pediatric endocrinologists had administered estrogen to tall girls within five years before the survey. Dousing children with adult hormones may have health effects. A recent study found that estrogen treatment of tall girls reduced fertility later in life. Other long-term effects are unknown.

At least this revolting practice isn’t as painful as leg-lengthening operations. Occasionally performed in the US for achondroplasia, a type of dwarfism associated with early epiphyseal fusion, leg-lengthening surgeries are also performed on normal-sized people in China, as a type of cosmetic surgery. The procedure involves breaking the leg bones, and inserting steel pins. The legs are then stretched over a period of months by turning screws on an external steel frame attached to the pins. It’s a little like volunteering for rack torture.

But back to the truncated child. She was cared for by her family, which feared that the growth spurt and menses that come with puberty would complicate care. No one should judge this family, which made a loving, brave, and arduous choice to care for a forever-young child at home. Caretaking a severely disabled person involves daily, crushing, repetitious, unending responsibility that is unimaginable to those who have not experienced it. (Those of you who haven’t can damn well bring the rest of us dinner.)

A full portion of censure, though, should be directed at the physicians who participate in shortening children. It is unconscionable to use medical skills and tools for purposes that do not in any way benefit the patient. And the ethics committee members who approved this travesty of health care should be forced to have leg-lengthening surgery. Lopping off inches and organs in a child incapable of consent is worse than leg-lengthening surgery, which at least adults consent to, and worse than giving estrogen to tall girls (who at least can run). If we accept height reduction and organ removal for the convenience of caretakers as an ethical choice, then the path to ethical entropy is laid. What’s next: removing the legs of disabled adults? Rather than misusing medication for social controls, we should be working towards reducing the burden on families who care for the disabled at home. The severely disabled need comprehensive care, and caregivers need adequate assistance and regular respite. The use of height-altering drugs or surgery for perceived social advantages or caretaker convenience cannot be condoned in a civilized society.

Comment on this essay.

Comments are sent to the forum moderator. Select responses may be posted.

A Phony 'War on Science'
Michael Gerson, Washington Post
“In their talk of a Republican war on science, liberals may be blinding themselves to a very different kind of modern war in which their own ideals are deeply implicated: a war on equality.”

It’s Not Immoral to Want to be Immortal
Arthur Caplan, MSNBC
“Despite a lot of hand-wringing and finger-pointing, it is not obvious that wanting to live a lot longer is evil or immoral.”

Science Is Leading Us to More Answers, but It's Also Misleading Us
David A. Shaywitz, Washington Post
“Consumers of scientific information must balance the hope we place in global biology with the skepticism this field has surely earned.”

Taking the Scary out of Breast Cancer Stats
Carol Tavris and Avrum Bluming, LA Times
“The media understand how deeply women fear breast cancer, and the result is that every study that seems to find a link between some new risk factor and the disease makes headlines everywhere.”

Dollars to Doughnuts Diagnosis
Albert Fuchs, LA Times
“Insurance doesn't make routine care affordable; it makes it more expensive by adding a middleman.”

Tainted Medicine
Jerome P. Kassirer, LA Times
“Disclosure of financial ties may give a scientist or researcher a clean conscience, but that doesn't erase the possibility of a conflict.”

Children's health can't be left to faith alone
Arthur Caplan, MSNBC
“Parents do not have the right to watch a child wither away while they pray.”

Transplant List Numbers Raise Doubts
Arthur Caplan, MSNBC
“The American people have a right to expect absolute honesty about the number of people waiting for a transplant at any time.”

An Epidemic No One Wants to Talk About
Robert E. Fullilove et al., Washington Post
“Simply put, we will never rid the United States of HIV and other STDs if our only weapon is medical treatment.”

Making Cells Like Computers
Erik Parens, Boston Globe
“Conceivably, we are on the verge of installing synthetic genomes in bacterial cells to create products we want. But we are still a long, long way from doing what most people mean by ‘synthesizing life.’”

Miracle Workers?
David Rieff, New York Times Magazine
“Even today, the oldest of all relations between patient and physician — that of supplicant to shaman — continues to exert its authority.”

Overselling Overmedication
Judith Warner, NYTimes.com
“Most of the critics decrying the over-medicalization of the American mind rest their arguments upon the bedrock assumption that people who have nothing wrong with them are being medicated for largely fictitious concerns.”

Ads Spur Urge for Drugs
David Lazarus, LA Times
“DTC advertising has turned prescription drugs into just another gotta-have-it consumer product.”

Food Politics, Half-Baked
James E. McWilliams, New York Times
“Lost in this rhetorical battle was a quiet middle ground where the benefits and drawbacks of genetically engineered crops were responsibly considered.”

Perpetrating the Autism Myth
Benjamin Kruskal and Carole Allen, Boston Globe
“The scientific evidence is clear: neither the MMR vaccine nor thimerosal (mercury) in vaccines has any relationship to autism.”

Closing the Barn Door After the Cows Have Gotten Out
Verlyn Klinkenborg, New York Times
“The real beneficiaries are the nation’s large meatpacking companies — the kind that would like it best if chickens grew in the shape of nuggets.”

Human Embryos Cloned: What Does It Mean?
Art Caplan, MSNBC
“Let's not be frightened by scare tactics into not funding research that may be the key to curing what is currently incurable.”

Don’t Ask, Don’t Tell Is Bad Policy for Cloned Food
Art Caplan, MSNBC
“All of this fear-mongering about clones has made Americans forget that cloning is nothing more than artificially creating twins.”