How We Treat Inter-sexed Babies: Part 1

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How We Treat Inter-sexed Babies: Part 1

Bianca I. Laureano

Part one of a three-part series examining the practice in the United States of shortening and cutting of enlarged clitorises in babies with congenital adrenal hyperplasia (CAH) .

Recently there has been a burst of discussion regarding unethical and questionable research conducted in the United States on babies whose assigned sex at birth was female but who were born with enlarged clitorises. Many of these stories shared outrage over the practice of shortening the babies clitorises, and most especially about the ethics surrounding the “follow-up” examination conducted by Dr. Dix P. Poppas.

When I first heard about the article Bad Vibrations written by Drs. Alice Dreger and Ellen K. Feder it came to me from a good friend who had introduced me to several activists working in Africa around female genital mutilation and ritual cutting practices. As I read the article I had a few problems with the responses and writing about Dr. Dix P. Poppas who was shortening (i.e. cutting) the clitorises and following up with the young children as they aged.

My issues are as follows: 1. This is not a new practice in the United States, 2. The “professionals” quoted were not people who were the best to be quoted on the topic, and 3. How/When will the outrage presented lead to action? I will share each of these positions and discuss them in depth over three posts. I’m doing this because I tend to write a lot because I have a lot to say and want to make sure readers don’t get overwhelmed reading the screen! Today, I’ll focus on issue number one: This is not a new practice in the United States.

In the United States it is common practice for physicians to examine the genitalia of newborn babies. It is also not an unusual practice to measure the size of a baby’s clitoris. I remember in my master’s program in human sexuality education, one of my professors sharing with our class the device (basically a “ruler”) that is used to measure a newborn child’s external genitalia (clitoris, penis, testicles). I’ll admit I was shocked at this. I asked a friend who is a pediatric physician the name of the device and she told me there are multiple ways that physicians are trained to measure such body parts.  She said that  “actually the rulers we use to read TB skin tests – very small, also one can use calipers.”

Sex. Abortion. Parenthood. Power.

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In the book Adolescent Health Care: A Practical Guide by Lawrence S. Neinstein, Catherine M. Gordon, Debra K. Katzman, David S. Rosen and Elizabeth R. Woods, published in 2008, Chapter 58 on “Hirsutism and Virilization” states that for a physical examination for signs of virilization practitioners shall:

Check clitoral diameter or index. A clitoral diameter >5 mm is abnormal and is a measurement that can be easily followed up. The clitoral index is the product of the vertical and horizontal dimensions of the glans. The normal range is 9-35 mm, a clitoral index >100 mm suggests a serious underlying disorder (page 750).

If you have not yet read Sexing The Body: Gender Politics and the Construction of Sexuality by Anne Fausto-Sterling, add that to your summer reading list as soon as possible! I’m using chapter 3 of the book: Of Gender And Genitals: The Use And Abuse Of The Modern Intersexual this summer in my Sociology of Human Sexuality course I am teaching.

In the text Fausto-Sterling discusses what unfortunately happens all too often to babies born with “ambiguous genitalia” or as Fausto-Sterling says, “mixed genitals.” Fausto-Sterling writes:

“Oddly, the contemporary practice of ‘fixing’ intersex babies immediately after birth emerged from some surprisingly flexible theories of gender. In the 1940s, Albert Ellis studied eighty-four cases of mixed births and concluded that ‘while the power of the human sex drive may possibly be largely dependent on psychological factors…the direction of this drive does not seem to be directly dependent on constitutional elements.’ In other words, in the development of masculinity, femininity, and inclinations toward homo-or heterosexuality, nurture matters a great deal more than nature. A decade later, the Johns Hopkins psychologist John Money and his colleagues, the psychiatrists John and Joan Hampson, took up the study of intersexuals, whom Money realized, would, ‘provide invaluable material for the comparative study of bodily form and physiology, rearing, and psychosexual orientation.’ … They concluded that gonads, hormones, and chromosomes did not automatically determine a child’s gender role.

“Today, despite the general consensus that intersexual children must be corrected immediately, medical practice in these cases varies enormously. No national or international standards govern the types of intervention that may be used. Many medical schools teach the specific procedures discussed in this book, but individual surgeons make decisions based on their own beliefs and what was current practice when they were in training—which may or may not concur with the approaches published in cutting-edge medical journals. Whatever treatment they chose, however, physicians who decide how to manage intersexuality act out of, and perpetuate, deeply held beliefs about male and female sexuality, gender roles, and the (im)proper place of homosexuality in normal development.” (p. 46-48).

I share these quotes with you because, although the babies whose sex assigned at birth as female had one of the most common types of intersexuality–congenital adrenal hyperplasia (CAH)–the determination of their sex came from what their genitals looked like. These quotes also demonstrate the decades of research and “work” physicians have done with and on human patients. The decisions by physicians are embedded in paradigms that run deep and that overlap with how intersexuality and “mixed-sex” people are seen as needing to be “fixed” to live a “normal” life.

Many people commenting on this study expressed confusion and disgust with how parents have chosen to have their children clitoris’ cut/shortened/operated on. Fausto-Sterling’s discussion of parental consent and information is that:

“[d]octors, because they generally view intersex births as urgent cases, are unaware of available resources themselves, and because the medical research is scanty, often simply tell parents that the condition is extremely rare and therefore there is nobody in similar circumstances with whom they can consult. Both answers are far from the truth” (p 51).

This is an institutionalized practice. I’ve discussed with many friends and colleagues in the field of sexuality and sexual science the need to train doctors and practitioners on various aspects of human sexuality. Of course, this “training” has rarely been provided, and when it is provided, it comes from people whom many advocates today would consider as perpetuating a rigid and dichotomous ideology about gender and how genitals are supposed to look. When I discuss genitals with my students I use a popular analogy that vulvas and penises are like faces. Many have the same parts and work in similar ways but they all look different, not always the same.

I’m an advocate of having sexologists who do not have medical degrees train doctors on how to work with and speak to families of children born with genitalia they would consider different. In addition, I think it’s also a good idea to have people who have become adults and were categorized as intersex speak with providers and share their histories and experiences.

In part three I will discuss advocacy efforts by various groups in the U.S. and abroad surrounding this topic and provide references and resources to their work and activism. The questions in part three will include: How can we learn and build from past efforts to create change within our communities while also producing knowledge to help shift rigid ideas about genitals and gender?

Part two will focus on who is considered worthy of quoting as an “expert” and how that affects our ability to acquire and create knowledge. Who is included and excluded and what limitations exist? How do we hold our “experts” accountable when the work they do continues to harm and hurt our communities?