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Experimental drug being used to “fix” intersex genitals

This is a post that I wrote for Feministing a few weeks ago. I wanted to cross-post it here because this issue, of kids born with intersex conditions, definitely comes up for birth workers. While you may not have had this experience yet, it’s possible that one day you will be with a family when their child is born with an intersex condition. This could lead to all sorts of responses from the midwives or doctors you are working with–including the decision to perform surgeries on the infant.

It’s a huge issue, and one that is difficult to tackle in a blog post. But it’s one that I would like to keep writing about. Just as I talk about gender and the ways folks identify outside of the binary of male and female, there is also the biological fact of gender diversity, exemplified by folks who are born with intersex conditions.

At the moment of birth, when the doctor/midwife/practitioner wants to issue the hallmark phrase–”It’s a boy/girl!” if there is any confusion around this, it becomes a huge issue.

Maybe it shouldn’t be–and maybe one day we’ll move away from such a strong propensity toward gender categorization. In the meantime, we’re dealing with doctors who would rather employ experimental hormonal treatments in utero and perform radical medically unnecessary surgeries on infants than deal with gender ambiguity.

Obviously I have a strong opinion on the matter. The post below has more info, if you’re confused about what I’m saying.

This issue has been getting some major press lately (Courtney mentioned it the What We Missed yesterday) but in my opinion it’s being misreported.

Time has a good breakdown of the experimental treatment we’re talking about:

The early prenatal use of dexamethasone, or dex, has been shown to prevent some of the symptoms of CAH in girls, namely ambiguous genitalia. Because the condition causes overproduction of male hormones in the womb, girls who are affected tend to have genitals that look more male than female, though internal sex organs are normal. (In boys, in contrast, the condition leads to early signs of puberty, such as deep voice, body hair and enlarged penis by age 2 or 3.) But while the prenatal treatment may address girls’ physical symptoms, it does not prevent the underlying, medical condition, which in some severe cases can be life-threatening, nor does it preclude the need for medication throughout life.

Basically, this drug dex is being given to mothers while pregnant who have an increased risk of giving birth to a child with CAH, an intersex condition that affects the hormone levels in the body, and can produce ambiguous looking genitalia.

This story is being talked about as a treatment to prevent lesbianism. It’s not. It’s a treatment to try and alter the genitals of babies with an intersex condition to make them seem more normative.

First, some intersex 101. There are many conditions which fall under the intersex umbrella, and can result in a person having any number of conditions that might get them defined as intersex. These things could affect the way their genitalia look, how their hormone levels are, what their chromosomes look like, what their fertility is like.

Let’s get even more 101 for a second. Our gender and sex divisions are an ever shifting set of categories and definitions. We don’t have a good rubric that says this is what a girl is, and this is what a boy is, despite the fact that we plan our entire society around this division. Why? Because it isn’t that black and white. Not all people we call women have two X chromosomes. Not all men have an XY. Same thing for hormone levels, fertility, genitalia, secondary sex characteristics. In reality, our bodies are extremely diverse.

Intersex conditions are actually really common: 1 in 1500 people in the United States is born with one (Reporting on this is not very good, nor is tracking. This is a conservative estimate). The medical communities response to these folks has been to try and alter their bodies to fit the social norms–assigning them a gender identity (based on absurd rules I won’t even get into) and then doing all sorts of things to babies to make them fit this norm. We’re talking genital surgeries that eliminate the possibility of sexual pleasure, as well as all the other complications that come with these types of surgeries on children.

There are all sorts of resources about intersex conditions, these surgeries and the movement to fight back against them. The Intersex Society of North America is one place to start.

The doctor’s involved in these treatments are making the link between gender and sexuality–they are also talking about the affects this treatment has on the likelihood of the person to get married, have kids, etc. But at it’s core, this is not about sexuality folks, or lesbianism. It’s about trying to use medicine to make everyone’s bodies fit into one box or the other, male or female, with really narrow ideas of what each box can look like.

This is about using a treatment that is untested, likely to be harmful and has no medical benefit. The only benefit, argued below, is that the child might not have to undergo surgeries. Surgeries which are not medically indicated to begin with, but instead are used to mask the natural gender diversity that exists in our bodies. These surgeries are a way to alter the person, rather than have them deal with a society which falsely believes that the gender binary is a bright line. Or rather, have their parents deal with it as children.

The Time article continues:

Meanwhile, the possible benefits are clear: the treatment can spare young girls the potential psychosocial problems associated with having ambiguous genitalia as well as the ordeal of surgery to correct deformities later. “I see potential for benefits and I don’t see evidence there’s any negatives to this. There are lots of risks associated with surgery, and if this can prevent surgery, then it’s a good thing,” says Dr. Ingrid Holm, a pediatric endocrinologist at Children’s Hospital in Boston.Research has also suggested that affected women who were treated with dex in the womb show more typical gender behavior than other women with CAH; the latter group tends to behave more tomboyishly and express little interest in having children. New told the Wall Street Journal in 2009 that the treatment further spares parents the “terrifying prospect” of not knowing whether their newborn is a boy or a girl.

The Doctor quoted here is leaving out one huge option–leaving kids genitalia alone, whatever it looks like. Most of these folks have functioning parts, meaning they can go to the bathroom and even orgasm. These surgeries are really about conforming these kids to societies standards–dealing with the anxiety of living in a falsely gender binaried world. Parents are often told to never tell their kids about their condition–many only find out through medical records when they are adults.

Intersex activists are fighting to stop the practice of genital surgeries on babies, instead arguing that these procedures should be held off until the child is old enough to decide for themselves what they want for their bodies and their identities.

This is just further evidence that our falsely binary idea of gender is hurting us–it’s even leading us to treat fetuses with experimental drugs.

Cross-posted at Feministing.com

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8 Responses to Experimental drug being used to “fix” intersex genitals

  1. Thanks for this post, Miriam! I completely agree.

  2. Naomi says:

    I think this is very important for birth workers to know about. My second son was a HBAC. A few days after the birth we took him to the hospital for a small concern. This hosptial was very homebirth hostile and they set out to find something, anything wrong with my child. He was just slightly dehydrated luckily but I found out later a ‘possible intersex condition’ was one of the things they didn’t talk to us about but mentioned in a consult with our family practice doctor. I wish care providers and people in general would feel more confortable talking about and become familar with the range of appearance of genitals. Even having an intact child is odd for some care providers.
    I love your work! Keep it up!

    • arkcaritas says:

      As someone who is intersex, I can’t see the issue you’d have with having an IS child. I thought parents were supposed to love their child no matter what- not “require” a drug that is already harmful to prevent the problems YOU will have with a child who isn’t YOUR ideal.

      • radicaldoula says:

        I don’t think Naomi is expressing that there would be any issue with having an intersex child, but instead agreeing that care providers need to be more comfortable talking about these possibilities with parents.

  3. arkcaritas says:

    The ISNA has been defunct for quite a while now. This is a drug that has been out for quite a long time and is supposed to help with CAH. It is really a drug to “prevent” female babies from becoming ambiguous. It has nothing at all to do with “preventing” intersex children from existing. I am intersex, and not from CAH… so please get your facts straight and stop writing things just to get publicity for yourself. You hurt others by not taking the time to get it right.

    • radicaldoula says:

      I realize there are a wide range of conditions under the intersex umbrella, and CAH is just one of them.

      My point in writing about this is the lack of information and understanding about intersex conditions and the “treatments” that are used for them.

      I do think that these kinds of treatments in utero, by way of “preventing female babies from becoming ambigious” are masking the issues at hand here, particularly since the treatments have no medical impact, and are mostly about social acceptance for these kids.

      I’m not sure that we are in disagreement here. I realize ISNA is no longer, but I appreciate that the resources on their website are still available.

  4. Lianne says:

    My understanding, such as it is, is that CAH can be fatal if left untreated. From a strictly medical viewpoint, doesn’t it make sense to treat it early?

    • a james says:

      Sorry that I’m replying over a year late here, but I figured I’d mention:
      The effects that are life-threatening in babies born with CAH have little or nothing to do with the appearance of their genitalia. The genitals are just a symptom. The “dex” “treatment” is NOT a treatment for CAH, but merely a, well, cosmetic hormonal procedure done to infants who would be assigned female at birth to alter the appearance of their genitalia without treating the underlying cause of the symptom of genital difference. Note that CAH occurs in male-assignable as well as female-assignable individuals, but that this treatment is designed only for female-assigned infants. Larger erectile tissue is just not considered an issue in CAH infants that are assigned male. This treatment is purely to conform female-assigned bodies with heteronormative body standards, not deal with the life-threatening conditions CAH can cause.

      I’m not an authority and I’ll admit I just skimmed wiki on this. but yeah.

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