Tag Archives: DES

Would You Do Anything (Dangerous) To Make Sure Your Baby Wasn’t Intersex?

Debbie says:

I never blogged Alice Dreger‘s fascinating TED talk, “Is Anatomy Destiny?” on biology, bioethics and gender when I watched it last year, but her name stuck in my memory. The talk is available at the link, and I recommend it highly.

Now she and two co-authors have published a truly horrific situation in the Journal of Bioethical Inquiry. Apparently, dexamethasone is being given “off-label” (that’s pharmaceutical-speak for “a way that it has never been tested or approved”) to pregnant women whose children may be “at risk” for intersexuality issues!

The pregnant women targeted are at risk for having a child born with the condition congenital adrenal hyperplasia (CAH), an endocrinological condition that can result in female fetuses being born with intersex or more male-typical genitals and brains. Women genetically identified as being at risk are given dexamethasone, a synthetic steroid, off-label starting as early as week five of the first trimester to try to “normalize” the development of those fetuses, which are female and CAH-affected. Because the drug must be administered before doctors can know if the fetus is female or CAH-affected, only one in eight of those exposed are the target type of fetus.

The off-label intervention does not prevent CAH; it aims only at sex normalization. Like Diethylstilbestrol (DES) — which is now known to have caused major fertility problems and fatal cancers among those exposed in utero — dexamethasone is a synthetic steroid. Dexamethasone is known — and in this case intended — to cross the placental barrier and change fetal development.

Let’s unwrap this:

Dexamethasone is a very powerful drug, used for a wide variety of different conditions. The only case in which it is used early in pregnancy is this one. It is used late in pregnancy to aid in fetal lung development in cases of expected premature birth. Even there, it is risky and associated with low birth weight, but not premature fetal death (as of a 2001 study).

Use of DES, a compound with a similar chemical signature, caused one of the worst stories of medical interventions in pregnancy. DES was used off-label to prevent miscarriage (which there was no evidence that it did) for more than 20 years and “aggressively marketed and routinely prescribed.” Up to 3 million pregnant American women were given DES. Since that time, having a mother who was given DES has been repeatedly proved to vastly increase the risk of certain cancers and somewhat increase the risk of other cancers, increase the risk of various deformities and also have some sexual/gender effects on the baby. “DES daughters” and “DES sons” are both affected, and the drug also may have increased the frequency of intersexual babies.

CAH, the condition that dexamethasone does not prevent has two major effects. First, it can be very dangerous to newborns because of how they metabolize salt. Dexamethasone won’t solve this.

Second, it can cause intersexual traits and increase of testosterone in babies who are genotypically female (and have full female reproductive systems). Signs of this include an enlarged clitoris and a shallow vagina. Dexamethasone may affect this.

So, here’s the bottom line:

1) Dexamethasone is being given to women before there is any evidence that their babies are female, let alone have CAH, so it is only “effective” for one in 8 babies.
2) Dexamethasone does nothing for the actively dangerous aspect of the condition it is supposedly treating.
3) We know little or nothing about the effects of dexamethasone in terms of causing either cancer or birth defects. However, the chemical similarities between DES and dexamethaosone raise the specter of long-term horrible effects on babies whose mothers take dexamethasone during pregnancy.
4) The concern that a girl baby might be “virilized,” i.e., have a big clitoris, increased testosterone, and possibly male secondary sex characteristics like facial hair somehow balances the first three points.

I really wonder how many women would say, “Yes, give me the drug” if a doctor looked them in the eye and said, “This drug might give your baby a more conventionally shaped clitoris and vagina, but it won’t help her in any other way. It won’t do anything positive for your baby if he’s a boy. And it might cause anything from deformity to early death from cancer.” But, of course, that’s not how doctors who think the drug is a good idea will frame the choice. And very few doctors are going to say, “If your otherwise girl baby has a big clitoris, a shallow vagina, and high levels of testosterone, she can have a great life!”

So thanks to Alice Dreger and her co-authors, Ellen Feder and Anne Tamar-Mattis, for pushing back against the ridiculous levels of social terror when faced with variety in genitals and hormone levels. I only wish they had as much power as the pharmaceutical companies and medical establishments they are opposing.

The High Cost of “Normal”: Children’s Height, Intersex, and Other Pressures

Laurie and Debbie say:

Jessa Crispin, well-known “bookslut,” is talking about a book we hadn’t known about: Normal at Any Cost: Tall Girls, Short Boys, and the Attempt to Manipulate Height, by Susan Cohen and Christine Cosgrove. In Crispin’s longer review, she covers not only this title, but Wetlands by Charlotte Roche (a novel) and Bodies by Susie Orbach.

Crispin also references another of her long reviews, this one of Thea Hillman’s Intersex (for Lack of a Better Word), and Fixing Sex: Intersex, Medical Authority, and Lived Experience by Katrina Karzakis.

Lots of books, and we haven’t read them (yet.) Crispin’s reviews alone make interesting points and raise good questions. First, what does children’s height have to do with intersex? Lots, and Crispin sums up the connection in one pithy sentence:

We have always gone to extremes to occupy some sort of physical middle ground.

Oddly, despite the book’s subtitle, Crispin doesn’t discuss how Normal at Any Cost covers the issue of short boys. However, Debbie has been reading Our Daily Meds by Melody Peterson (watch for a review here soon), and Peterson does talk about this issue:

Iowa doctors sometimes referred their young patients to a nonprofit group called the Magic Foundation, which was started by mothers with children with rare growth disorders in 1989. Over the years, the foundation had accepted hundreds of thousands of dollars form the companies selling prescription growth hormone products. In a campaign in the early 1990s, the Magic Foundation, as well as another group, the Human Growth Foundation, had measured the height of children in public schools. The screeners suggested that the shortest children visit their doctors for medical treatment. …

A story published in the foundation’s glossy magazine in 2005 was entitled “Me and My Growth Hormone.” The story began, “I was short. My little sister was taller than me. Kids at school picked on me and called me names.” The tale continued with the child getting growth hormone injections and growing so much his pants got too short. “I’m almost grown now,” the story ended. “I’m in the normal range on the growth chart. Growth hormone is like a miracle drug.”

Here’s Crispin on tall girls:

In the mid-20th century, doctors discovered they could control excessive height in girls medicinally, as opposed to the previous method of breaking and surgically removing sections of the leg bones. … If girls were brought into an accelerated puberty with high doses of hormones, they would stop growing earlier and shave off a few inches from their potential height….

Girls were loaded up with DES, short for diethylstilbestrol — a synthetic estrogen primarily prescribed to pregnant women to help prevent miscarriages. Unfortunately for the pregnant women, and the girls who were too tall, DES had a bevy of side effects: vaginal cancer, breast cancer, sterility, blood clots, increased rates of miscarriage, and depression. (The babies in utero were not spared: Many of the girls developed problems like T-shaped uteri, sterility, and vaginal and cervical cancer.)

We’ve known for decades about DES and pregnant women, and the next-generation girls who died from those treatments to their mothers. We didn’t know until now that the drug had other, less justifiable and equally dire, uses. It isn’t clear from these excerpts if tall girls are still getting hormone therapy, but a quick web search seems to imply that the practice has been so frequently revealed to be dangerous to the girls that we can hope it is no longer widely practiced.

And here’s Crispin on intersex surgeries:

Doctors and parents think they are sparing children embarrassment and pain. But now intersex activists are fighting to create a new protocol, one that waits until the child can participate in “hir” (forgive me — I know the pronoun is a clumsy compromise, but one that comes up a lot when you start reading about gender theory) own treatment.

… surgery that is mostly cosmetic is still performed on infants — despite the fact that it usually requires follow-up surgery, that puberty will alter the appearance of genitalia anyway, and that it can elimination sensation or even make arousal painful means — that this is an issue beyond functionality or health alone.

“The debates over when to perform surgery and how best to decide gender assignment obscures the fact that in trying to make infants with intersex diagnoses ‘normal’ boys and girls, physicians and parents are necessarily drawing on cultural ideas about what constitutes male and female.” That includes assigning sex by guessing future sexual orientation in the hopes of avoiding any homosexuality.

The pressures on us as individuals, and especially as parents, to do what ever we can to move toward “normality,” (always a slippery concept and most frequently a divisive and nasty one) are enormous. Some of the most tragic mistakes are made “for the sake of the children.” Every parent wants their children to be healthy, happy, and successful: it’s incredibly easy to transfer this protective motivation into dubious or inappropriate choices. The pharmaceutical companies, the doctors, the media, and often our families and friends are arrayed on the side of this middle ground. Holding our own, accepting ourselves as we are and our children as they are born, dividing medical necessity from cosmetic panic, embracing variety: these things are difficult.

Crispin buries one clue to what makes them so difficult in her comments on Orbach’s Bodies:

One wishes she offered an action plan for women on how to navigate such a toxic environment with confidence. She has been writing about this issue for years, publishing her monumental book Fat Is a Feminist Issue in 1978 — surely she has some tips by now.

This is a terrifying statement. In Fat Is a Feminist Issue more than 30 years ago, Orbach laid out exactly such an action plan. She was one of the first to do so, she has hardly been the last. We can find these action plans in Our Bodies, Ourselves and all the spin-off books. We can find them in almost any size acceptance book, or blog (including this one). We can find them wherever feminists gather, wherever feminists write, wherever feminists talk. Our voices aren’t as strong as the “normality” crowd, and we don’t have as much money–but we still have the power to move even the multibillion-dollar beauty industry, as in Dove’s “Campaign for Real Beauty,” which is not only popular but has many imitators.

Crispin herself makes one of the key points: “If we want to raise happy, healthy daughters, it would seem we have to start with ourselves.” That the well-read careful thinker Crispin knows so much about this issue and is still looking for such roadmaps tells us not how hard they are to find, but how hard they are to remember and hang onto.

Thanks to Arthur D. Hlavaty for the pointer.