Wednesday, September 16, 2009

Paging Dr. Gupta -- My 2 cents on intersex and gender (re)assignment

One of my closest friends since medical school, Dr. Anuj Gupta (who is now a psychiatrist in NYC) happens to be one of the most intelligent, insightful people I know. So if he comes to me asking my opinion on anything, I know I'd better either a) know what I'm talking about, or b) do some reading on the subject.

Anuj came to me asking my opinion on something he will be discussing with his group on Friday. Not surprisingly, I had to do some reading on the subject or else risk being the butt of their jokes.

The topic is gender reassignment and whether the act of surgically changing one's sex to their "true" gender identity actually heals the psychological wounds these individuals carried prior to the procedure. The article Anuj pointed me to, written by esteemed Johns Hopkins psychiatrist Paul McHugh, MD, can be found at:

Although I cannot pretend that I have taken care of many patients with gender identity disorders, the issue of gender assignment in newborns is one that I do have some experience with. This is a topic of great medical and ethical controversy: everytime I see a newborn with ambiguous genitalia I know very well that whatever gender the family chooses for that child around the time of birth, when the baby grows up to assume an identity of his/her own -- and when he/she learns that his/her gender was chosen by the parents -- there is a good likelihood it will cause confusion, anger, and distress in that individual.

Briefly: a newborn with ambiguous genitalia is defined as one in whom it is difficult or impossible to determine whether the external genitalia are male (penis/testicles) or female (clitoris/vagina) at the time of birth. This can be caused by a number of different conditions, and I could write a book on each. But the key is: there are a subset of genetically male children (XY karyotype) whose genitalia more closely resemble a female's than a males, and conversely there are genetically female children (XX) whose genitalia more closely resemble a male's than a female's.

If you take only one thing from this overly long post I am writing, here it is: an individual's sex is determined by the manner in which they are reared rather than their genetic makeup. An XY individual who is raised as a girl (usually following surgery to create female external genitalia) is a FEMALE. An XX individual who is raised as a boy (and who often has a series of surgeries to produce a phallus) is a MALE.

When a baby such as this is born, they often spend time in the NICU in order to have labs drawn to first determine the genetic sex of the baby, and then to make sure there are no potentially life-threatening conditions that may have resulted in the ambiguous genitalia. Once this information is known, what typically ensues is a series of conversations between the parents and urologists (who would perform any desired surgery to create either male or female-appearing external sexual organs), endocrinologists (who help discuss why the child's genitalia developed in the manner they did, and discuss future options for hormone replacement) and psychiatrists (to help with the understandable and expected emotional stresses the family will face).

I can only speak from the standpoint of an endocrinologist. In my field, there are two distinct thought processes on what the optimal approach should be. One is to perform surgery within the first months to year of life based on a quick but well-reasoned decision based mostly on the ease of the surgical approach. If it is less difficult for the urologist to create female genitalia, then the child should be raised as a girl. If it is easier to create a phallus, then it should be a boy. This is irrespective of the child's genetic sex (ie, karyotype). In this philosophy, the child will mold his/herself to take on the sex that the parents have assigned, whether or not that sex is the same as the genetic sex.

The other approach is to go by the philosophy that although it is important to assign a sex to the child early in life, surgery is usually neither urgent or emergent (excepting conditions that are incompatible with life unless surgery is performed immediately, such as cloacal exstrophy). Advocates of this approach believe that the parents can make their best reasoned judgment around the time of birth and raise the child with the sex they have chosen for legal and social purposes, but that ultimately it is the child that will declare what sex he/she is. By not making a definitive decision (by holding off on surgery), adjustments can be made if the child determines that the parents' choice was wrong.

Anuj, directly to you and for your conference on Friday: let me paraphrase Dr. Claude Migeon, a mentor of mine who is one of the pioneers of pediatric endocrinology and the world's foremost expert in intersex conditions. Dr. Migeon would tell you from his experience that individuals who are genetically XY -- who usually are exposed to more testosterone than XX individuals, especially in utero -- develop what he calls a "male brain" regardless of what gender they are assigned by their parents. These XY girls tend to be somewhat more aggressive and more drawn to "typically male" activities. And Dr. Migeon would tell you that the grand majority of the time, when a teenager that was born with ambigous genitalia comes to him years later complaining that the parents chose "the wrong sex," it's an XY female -- an individual with a male genetic sex who was raised as a girl.

Less anecdotally and straight from the literature, there is the case of David Reimer. In 1967, John Money, a prominent sexologist at Johns Hopkins Hospital, recommended that David, a boy who had lost his penis during a failed circumcision, be sexually reassigned and raised as a girl. Despite being raised as a girl from the age of 18 months, Reimer was never happy as a girl, and when he learned of his sex reassignment, he immediately reverted to living as a male. Money never reported on the negative outcome of Reimer's case, but in 1997, Reimer went public with the story himself. His case, as well as numerous cases of genetically male (XY) infants with ambiguous genitalia at birth who have been reassigned and raised as females such as Dr. Migeon's, suggest that gender identity is innate and immutable.

If you want my opinion, let me quote Dr. William Reiner, a psychiatrist and urologist at Hopkins, who belives, above all, parents and physicans:

  1. Must be flexible
  2. Must be observant
  3. Must listen
to the patient. I would think this goes for the child who is coming to grips with the discordance between genetic sex and the sex the parents chose, as well as the adult who believes his/her "true gender" and genetic sex were never the same to begin with.

For this reason, while Dr. McHugh has reservations about gender reassignment due to having "witnessed a great deal of damage from sex-reassignment," I would argue -- at least in children -- we owe them the respect and opportunity to make for themselves a decision that was never granted them in infancy. After all, it is they, and not their parents, who are the only ones who will ever know what really feels right on the inside, even if it looks nothing like how they were raised on the outside.

Be Well,

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