De-Queering the Fetus

recent article by Alice Dreger, Ellen K. Feder, and Anne Tamar-Mattis documents the controversial application of prenatal dexamethasone in pregnant women. The impetus for this pharmacological therapy is to stop virilization in female fetuses that may be affected by a form of congenital adrenal hyperplasia (CAH) called 21-hydroxylase deficiency or 21-OHC CAH.

Don’t allow the medical jargon to turn you away from what’s taking place here: the steroid is administered to pregnant women with the goal of stamping out intersexed bodies while ultimately minimizing the likelihood that a female will grow to be butch, lesbian, bisexual, and/or transgender. Yes, you read that right. This is an ongoing medical project that is motivated by homophobia, transphobia, sexism, and cissexist ideals. Let’s back up a bit and unpack some of the medical jargon that complicates our understanding of systemic hate.

CAH is a disease of the endocrine system (the hormone regulating mainframe of the body). There are variations of CAH and the one of interest here is 21-OHC CAH. 21-OHC CAH leads to an over production of androgens, which could lead to a genetic female fetus “developing along a more masculine pathway neurologically and genitally” (5). The term for this masculinization is virilization, which manifests in many ways but can lead to masculinized female genitalia, of which is a surface motivation (e.g. justification on grant applications) for the use of prenatal dexamethasone. CAH is a serious disease and as such, every U.S. state requires that newborns be screened for it. However, at case here are fetuses that may be affected by CAH, not newborns that are affected by it. The authors expose that 87.5% of those fetuses that are exposed to prenatal dexamethasone stood no chance to benefit from the therapy at all.

Prenatal dexamethasone is a steroid that is theoretically used to stop the effects of 21-OHC CAH. However, the drug is experimental and there is no substantial support for its use. In the U.S. it is categorized as “off-label,” which means that it is not FDA approved. As it stands, there is very little known about the impact of the therapy but it may alter “fetal programming,” which can result in serious metabolic problems that may not be apparent until adulthood. For 30 years, the steroid has been used to combat virilization in female fetuses and yet, little is known of its impact because there are few long-term studies that explore its impact—of those, the populations are not representative and the protocol does not meet national or international scientific standards. In fact, the Endocrine Society set up a task force to look at the effectiveness of the pharmacological therapy. The task force found very little support for the use of the steroid and “could not even say with confidence whether prenatal dexamethasone works to reduce genital virilization” (2).

Nonetheless, it has been administered to pregnant women on false pretenses. The pregnant women were/are not informed that the “off-label” steroid is experimental, that benefits and risks have not been established due to lack of adequate testing and scientific protocol, and that exposed fetuses are studied retrospectively effectively rendering moot any correlation between the drug and the fetus born one way and/or raised another.

The “most prominent promoter” of this therapy is Maria New, a pediatric endocrinologist at Mount Sinai School of Medicine. By 2003, New has “treated” more than 600 pregnant women with dexamethasone in order to prevent virilization in CAH-affected female fetuses. That number is as high as 2,144 fetuses. This is where the story turns sour and scary—or more sour and scarier.

Despite a lack of support for prenatal dexamethasone Maria New insists that it “has been found safe for mother and child” (15-16). The authors of the article do some bold investigative work and turn to New’s grant applications discovering some interesting motivations for the continued use of the steroid.

Those few studies that do exist show that girls affected with 21-OHD CAH exhibit “behavioral masculinization.” These girls are on average “more interested in boy-typical play, hobbies, and subjects that non-affected females, less interested in becoming mothers, and more likely to grow up to be lesbian or bisexual” (6). Some clinicians find that of those females with 21-OHD CAH, 5% may ultimately identify as male. “Behavioral masculinization” is a euphemism for non-traditional gender performance or expression in women, females, and/or girls. It seems that the underlying motivation has less to do with ambiguous genitalia (which is problematic itself) and more to do with minimizing “tomboyism,” non-heterosexuality, and trans* embodiment.

Interestingly, the U.S. National Institutes of Health have funded Maria New’s work in figuring whether or not prenatal dexamethasone works to stop “behavioral masculinization.” Said another way, the U.S. government funds New’s work in stopping queerness and/or trans*ness in those potentially affected with 21-OHD CAH. Please, read that again for the sake of letting it sink in.

One justification for using prenatal dexamethasone is to minimize the chances of having a child that is intersex so that “corrective” surgeries will not be necessary. However, such “corrective” surgeries are elective and yet this reason is used as grounds to administer this potentially dangerous drug.

The unknown effects of prenatal dexamethasone are as potentially damaging and traumatic to intersex bodies as invasive “corrective” surgeries that claim to “fix” a problem when the problem isn’t the fetus at all. The inspiration for this pharmacological therapy is stigma and anxieties surrounding intersexed and/or queer bodies. It is a medical intervention that works to ensure the production of relatively normative bodies no matter the cost to those that are at risk of teetering between cissex and intersex embodiment. The anxiety/fear-inspired application of prenatal dexamethasone points us to the intersection of sex, gender, and sexuality and those systems that work to keep them aligned more nicely.

Speaking to parents of children with CAH, Maria New “showed a picture of a girl with ambiguous genitalia and said: The challenge here is to see what could be done to restore this baby to the normal female appearance which would be compatible with her parents presenting her as a girl, with her eventually becoming somebody’s wife, and having normal sexual development, and becoming a mother. And she has all the machinery for motherhood, and therefore nothing should stop that, if we can repair her surgically and help her psychologically to continue to grow and develop as a girl” (italics mine 6).

For New, the prominent cheerleader in prenatal dexamethasone therapy, girl/female/woman are one and the same and are heterosexual desiring motherhood and marriage. For New, queer variation is inconceivable. For New, prenatal dexamethasone is the ultimate in conversion therapy because it gets at the “problem” before it is a problem. It does so even though the long-term impact is unknown and potentially fatal. New, and her supporters, will do whatever it takes to ensure that queerness is squashed at every chance. For the record, you can contact Maria New at maria.new@mssm.edu.

Comments

  1. Great post, Benny! With extra thanks for bringing the medico-speak down to earth. Sad and scary that this is where some docs choose to use their energy.

  2. So what they are trying to do is to make the babies more gender sterotypical in their behaviors etc? That seems scary to me, attempting to getting rid of all variations in order to make “proper” boys and girls. And they actually receive funding for this!?

  3. I see this as parents/mothers looking into doing what’s best for their children. If you accept the idea that masculine women are treated differently (in a bad way), then you might accept one’s efforts to stop this from happening to their child.
    That being said, it’s society’s fault in the first place that these people are treated negatively. However, don’t blame the doctors for trying to make money and don’t blame the parents for trying to protect their children from social challenges. If it helps these children, it’s likely a good thing.

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