Sometimes the trouble with being different is that parents and doctors want to fix you. And sometimes their good intentions backfire.
A few weeks ago, I read headlines that accused Dr. Maria New, a prominent endocrinologist, of prescribing a drug to pregnant women in order to prevent the birth of lesbian daughters. The drug, a steroid called dexamethasone, is sometimes given to female babies in the womb believed to be at risk of developing ambiguous or masculine-looking genitals, a condition called congenital adrenal hyperplasia (CAH). According to her critics, New had suggested that the treatment may also reorder the brains of these girls as they grow up, making them feel more feminine, to marry men and to have children.
Dex, as it's called, reminded me of another notorious drug, DES, or diethylstilbestrol, a synthetic estrogen, which was given to thousands of girls in the U.S. to keep them from growing "too" tall. Too tall to find husbands and raise families.
I was one of them. I was "different," and different in a way that could be treated medically. I was prescribed DES, a drug that had been around (and arousing suspicions) for years, and I swallowed the brightly colored pills daily from the time I was 14 until I was 19. For my own good. For my future happiness. Because my mother worried that her very tall daughter ran the risk of a miserable future. And because a local internist in a small town was eager to try this new therapy with an off-label drug that he'd read about in medical journals.
The problem was, what seemed to make me so different in the mid-Sixties, made me less different as the decades rolled on. Measuring 5'11" in tenth grade meant I didn't get invited to dances and it was hard to find pants long enough. Boo-hoo. I got over it. These days I work on a college campus where I don't feel so tall any more; women's athletics is big now, making me feel, if not small then just average when I stand next to our women volleyball and basketball players.
But an even bigger problem was that DES turned out to be an especially nasty drug. Doctors had prescribed it for decades to pregnant women in a misguided attempt to prevent miscarriages. One day they discovered some of the teenage daughters of those women had developed horrific cancers; later they learned that other daughters and sons developed reproductive abnormalities that resulted in infertility. Now, even the grandchildren of those pregnant women appear to have been affected. Oops.
So in 1977, a group of pediatric endocrinologists, led by none other than Maria New, held a conference to reconsider the use of high-dose estrogens, like DES, in children, particularly in tall girls. In a supplement to the journal Pediatrics they concluded that the "short-term risks of high-dose estrogen therapy in the treatment of tall girls are small and not attended by decreased fertility."
But what about the long term? Despite the groups' advising doctors to "conduct close follow-up" of those girls who received treatment, it never happened. Girls grew up, got married, moved away, and their pediatricians, pediatric endocrinologists, or internists lost track of them. Nobody studied them. Until 2003, when researchers in Australia discovered that some treated girls did indeed suffer from impaired fertility. Oops.
In our book, Normal at Any Cost: Tall Girls, Short Boys, and the Medical Industry's Quest to Manipulate Height, my co-author, Susan Cohen, and I show how easy it is for "difference" to morph into dissatisfaction, and then be defined as disease or disability. For every tall girl who swallowed high-dose estrogens to cut her down to size, there are many more short boys whose parents and doctors shoot them up daily with human growth hormone and newer miracle drugs aimed at adding an inch or two--in hopes it will make them more successful or boost their earning power.
I don't know enough about the treatment that Maria New and her colleagues are offering to parents of fetuses identified as having CAH. But I do know there are parallels to the treatment I received: Like dex, DES was never approved for use by the FDA for treating tall girls, and most of us were not treated in a research setting by pediatric endocrinologists, but by local pediatricians, gynecologists, general practitioners, and internists-who sort of did their own thing.
I know I spent my adolescence believing my height was an awful problem--one that required a doctor's attention and pills that made me sick. I also know that not only were the medical consequences unclear, but the culture changed in ways my mother and my doctors could never have predicted.
Finally, one more thing I know is that fixing differences isn't necessarily a recipe for future happiness and that being different isn't a guarantee of misery.