Opinion

A 'too tall' tale: girls and the drug DES

HealthMedicineSocial IssuesFamily PlanningMassachusetts General HospitalBoston

In 1964, when I was 14, a doctor suggested to my parents that I seemed likely to grow "too tall" for a woman. By that he meant that I would grow too tall to be happy, too tall to fit in, too tall to find a man.

Fortunately, he said, there was something he could do about it. Soon after, I began taking massive doses of a drug he called "the same thing as birth control pills." The side effects were immediate and unpleasant: nausea, vomiting, leaking breasts, depression, weight gain. My mother complained, the dosage was adjusted downward, my stomach calmed down, and I continued taking the drugs for five more years. I also continued to grow until I was almost 6 feet tall.

Nobody ever seemed concerned about long-term side effects. But more than two decades later, I learned that the drug I'd been given was diethylstilbestrol, or DES, a synthetic chemical compound that acts like estrogen in the body and that is known today for causing cancer and reproductive abnormalities in the offspring of women given it during pregnancy.

The practice of using DES on tall girls had a long history. It was in the late 1940s that doctors at Massachusetts General Hospital in Boston first discovered a way to alter height -- a distinctive, heritable trait -- in girls whose parents feared their daughters were growing too tall. In those days, hormone discoveries were heralding a new era in medicine, just as gene therapy is today. Hormones were the miracle that would allow doctors to manipulate how tall a girl grew and allay her mother's fears.

Why would anyone want to stunt a girl's growth? Back then, if a girl were heading toward 5 foot 8 or, horrors, 5 foot 10, not only would she have trouble finding clothes that fit, she'd have a hard time finding a husband. And in the days when there were few options besides marriage and children for women, well, that left an old maid.

Before hormones came along, the best advice a medical columnist for the L.A. Times could offer worried mothers whose daughters were heading for the rafters was to limit their food intake and, for heaven's sake, eliminate vitamins. Some girls who reached towering heights had six inches or so of bone removed from their long legs, but that required a long and complicated recovery at the very least.

So with the availability of the cheap, synthetic drug DES, and the discovery that large amounts of estrogen could push a girl into and through puberty quickly, allowing less time for her bones to grow long, the tall-girl problem appeared to have a solution. An inherited trait that used to be a given -- tall stature -- could now be fixed.

In the U.S., it is estimated that thousands of tall girls obediently swallowed massive amounts of DES -- often 100 times the amount of estrogen delivered in a high-dose birth control pill -- daily over a period of several years. When DES was found to cause cancer in the offspring of women prescribed it during pregnancy, doctors switched tall girls over to different types of estrogen. The practice continues today throughout the world, although many fewer girls in the U.S. or their parents request the treatment.

Now it's OK to be tall -- just ask Michelle Obama, the Williams sisters or 6-foot-8 Brittney Griner, a Houston high school senior and basketball player with a powerful dunk that will propel her wherever she wants to go in athletics.

What became of the girls who were treated? Now women in their 30s, 40s, 50s and 60s, some are happy they had the treatment because they believe they might have been much taller, although there's no way to know because nobody can really predict a child's final mature height.

Others are angry. They blame myriad health problems -- including weight gain, ovarian cysts, miscarriages, blood clots, endometriosis, depression and infertility -- on the choices their parents made when they were children. And they wonder what else their long exposure to huge amounts of estrogen will do to their future health.

They have reason to be worried. The first real follow-up on several hundred stunted girls took place in Australia and showed a significant decrease in fertility among those who were treated.

In addition, the women whose height was stunted were not always happy about their final height or the efforts used to achieve it. The Australian researchers, who tracked down women and their parents decades later, discovered that some families were still unable to talk about the subject. One woman said her teenage daughter had run away years earlier rather than take the pills, and she beseeched the researchers to let her know if they found her.

I couldn't help but think about all this when I heard of the Los Angeles fertility doctor who recently said he would offer parents the option of selecting not only the sex of their child but their choice of hair and eye color too. After a flurry of criticism in the media, he backed down, saying designer babies are off his drawing board.

But they're sure to return in this era of genome mapping and gene therapy. And before we go too far down that path, we ought to think carefully about where we're heading. What kind of kid really wants her parents to choose her genes? If you don't like your mother's taste in clothes, say, or hairdos, why would you want her to pick out everything about you? And more to the point, whose life is it anyway?

Christine Cosgrove is the coauthor of "Normal at Any Cost: Tall Girls, Short Boys, and the Medical Industry's Quest to Manipulate Height," which was published last month.

Copyright © 2014, Los Angeles Times
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