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  • BIOETHICS FORUM ESSAY

Kid Too Big? We’ve Got Drugs for That

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.

 

Published on: November 6, 2006
Published in: Bioethics, Caregiving, Children and Families

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