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The Dex Diaries, Part 1: Changed in the Womb

One woman's story of a life course altered via prenatal drug exposure

With Ellen Feder and Anne Tamar-Mattis, I have a new peer-reviewed report out about an off-label drug use aimed at fetal engineering of sex development. You can read that report for free by downloading it here, and you can read the Slate coverage here. As part of educating the public about this issue, I asked my friend Kiira Triea to talk about what happened to her as a result of her mother being given another sex-development-altering drug when pregnant with Kiira. The following is written by Kiira. This represents the first in a new series of blogs I'll be posting at Psychology Today called "The Dex Diaries."

Today, in 2012, many people are aware that, from about 1940 through the 1970s, millions of girls and women were exposed to to the synthetic hormone diethylstilbestrol (DES) while they were fetuses in utero, generally in an attempt to prevent miscarriage. The women exposed in utero to DES were left at risk for developing many different cancers and for teratogenic abnormalities of their reproductive system which increased their risk of being unable to conceive or to carry a pregnancy to term. DES was used for decades, despite the fact that it was found to be ineffective at preventing miscarriage.

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I was exposed in utero to another drug, a synthetic (chemically manufactured) progestin used for miscarriage prevention. As with prenatal DES, the effectiveness, safety to mothers, and long term effects of this prenatal progestin had not been adequately determined, but doctors kept using it outside of clinical trials anyway. In some instances, depending upon the timing of exposure, it could affect a developing female fetus's reproductive system.

The effects of this progestin on female fetuses were limited to to the lower, visible female reproductive system and ranged from mild enlargement of the clitoris to masculinization: fused labia, a phallo-clitoris and urogenital sinus anomaly (the vagina is attached to the urethra below the bladder). There are a few rare cases where this rearranging of an otherwise-normal female's lower reproductive system caused doctors to misassign her sex at birth as male, even though she had female-typical chromosomes (XX) and female organs inside.

This is what happened to me, and so I was raised as an extremely feminine, apparently gay boy child until I was 14. Then I became a patient at Johns Hopkins' Psychohormonal Research Unit (PRU), run by John Money. Money himself wrote in a study with Anke Earhardt that, although progestin-exposed females might show some tomboyish traits, they seemed to outgrow these and showed no increased inclination toward attraction to females and no increased desire to be boys.

So according to Money and Earhardt, progestin-virilized females like me were what they thought of as pretty typical females. Yet still, when I ended up in his clinic, Money tried to surgically and hormonally assign me as a male and, to my knowledge, he did the same to two other female adolescents with histories parallel to mine. His methodology was unethical not only because this course of treatment was obviously harmful to me, but also because I know now that he told me several deliberate lies.

Being raised as a boy, even though I was a normal girl, wasn't a very good thing to happen to me, but I know now that it didn't hurt me so badly that I could not be happy and normal and sexual, had my disorder of sex development (DSD) been treated sensibly. It was the nature of being "treated" at the PRU for being a normal girl who was raised as a boy which hurt me. Eventually Money and his colleagues accepted that I was going to live as a girl and as a woman.

Amazingly, despite over forty years to study the lessons learned the hard way about in utero synthetic endocrine exposure, some physicians are proceeding down the same path today when they prescribe dexamethasone to pregnant women for congenital adrenal hyperplasia (CAH) to try to make their female fetuses sex typical. (Prenatal dexamethsone doesn't prevent or cure CAH.) These doctors continue to ignore the mechanisms put in place to protect patients from uninformed experimental drug usages and procedures.

The promises of dexamethasone's efficacy in possibly preventing some of the non-harmful characteristics of CAH—including tomboyism, an enlarged clitoris, and increased likelihood of homosexuality—in addition to unsupported and false claims that prenatal dexamethasone is "safe for mother and child"—have come from dexamethasone's primary advocate, Dr. Maria New. Dr. New's chief collaborator in the psychological effects of prenatal dexamethasone is Dr. Heino Meyer-Bahlburg. Dr. Meyer-Bahlburg was a collaborator of John Money's.

Beyond the obvious harmful sequelae of my pre-birth exposure to a drug which turned my life upside down, I sometimes suffer from a strange, haunting confusion. Because my "self" was changed without my participation before I even developed a "self", I have a sense of profound violation, as though I was not born, but rather, "made" and then "treated" for my "making" without regard to my humanity.

I frequently relate to characters like Rachel in the movie "Bladerunner", who is a "replicant" who cannot be differentiated from a "real" human. I wonder if there is an alternative universe where a different Kiira lives whose life had not been messed with in the way mine was. I wonder what she is like.

I very much wish I lived in that universe instead, because I do not believe that suffering builds character, but rather, simply reveals it.

How will the children who have problems caused by preanatal dexamethasone feel when they understand that their bodies, their essential "selves," were harmed by some degree of collusion between the two groups of people assumed to have the most commitment to protecting children from harm: their parents and doctors? I think they will not be happy. It is wrong for parents to believe that their parenthood bequeaths the right to harm their child to conform to their beliefs. Human reproduction does not come with such guarantees. Street children are often the extreme result of parents' dissatisfaction—their children are simply discarded.

But what if some doctors blatantly lie to parents about prenatal dexamethasone? Parents may believe they are protecting their unborn child from the "cognitive dissonance" and confabulated suicides of children born with benign genital anomalies, when in fact, scientific evidence—actual follow-up data derived from adults who escaped harmful "treatment" for these conditions—show that these ideas are cultural prejudices, not actual outcomes.

Initially it may seem that harmful interventions are successful because parents' anxieties are lessoned. But as children mature and the problems of iatrogenic (medically-caused) harm begin to manifest, familial relationships often deteriorate when children come to understand the derivation of the harm they are experiencing. Parents may bear terrible guilt or denial over allowing this harm to occur.

Early unnecessary interventions should be recognized for what they are: quick fixes which make adults feel better but are in the long term destructive to childrens' socio-sexual well being and family structure.

The in utero interventions being promoted by clinicians like New are a continuation of the medically incorrect, culturally-derived treatment model for DSD which has existed since the early 1950s and which has increasingly been proven to be harmful. Given that dexamethasone has shown to be harmful (in Sweden, prenatal dexamethasone for CAH has shown to be so harmful that even clinical trials of the drug have stopped), it should simply not be sold to parents as "safe for mother and child", as Dr. New's website continues to advertise.

In the early 1990s, when I started doing advocacy for children with DSD, doctors could legitimately claim that they were doing what was deemed best at the time. But clinicians like New and Meyer-Bahlburg can no longer make this excuse. This "treatment" model and tool, a synthetic steroid shown to be harmful, fails completely to acknowledge the lessons learned from the past.

It is inappropriate to utilize harmful medical procedures and technology on children to assuage and validate the defects and prejudices of certain adults. This medical process enlists unborn children into the role of objects bent to the task of compensating for our culture's ignorance, prejudices and hatreds, whether expressed by or reflected by some parents and doctors, while giving no consideration to the pain this socially sanctioned cycle of iatrogenic destruction extracts from those children, their families, and ultimately our culture.

 

My thanks to Kiira for this latest contribution to our understanding of these issues. To read the history of prenatal dexamethasone for CAH, download the article from Springer. In the next installment of The Dex Diaries, I'll explain why we called on the federal government to investigate the matter.

Alice Dreger, Ph.D., is a Professor of Clinical Medical Humanities and Bioethics at Northwestern University's Feinberg School of Medicine in Chicago.

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