Wednesday 19 January 2011

46XX, CAH, Masculinised Genitalia and Gender Assignment

From Review of Outcome Information in 46,XX Patients with Congenital Adrenal Hyperplasia Assigned/Reared Male: What Does It Say about Gender Assignment? P.A. Lee and C.P. Hou International Journal of Pediatric Endocrinology Volume 2010 (2010), Article ID 982025
There is ample historical verification of 46,XX congenital adrenal hyperplasia (CAH) patients being born with essentially male genitalia while outcome information is scant. Prior to glucocorticoid therapy, most patients died very young from adrenal insufficiency. Most available reports from later childhood, contain little information concerning sexual identity. Reports on older individuals lack adequate information about sexual identity and quality of life. The difficulty in assessing the relative impact of multiple dynamic environmental factors on the development of sexual identity, self- and body esteem and overall adjustment to life is clear. Nevertheless, it remains unclear whether those infants whose masculine genitalia at birth resulted in an initial male assignment would have enjoyed a better adult outcome had they been allowed to remain male rather than the female reassignment that most received. Further, one could ask whether a male sex of rearing should be considered in 46,XX CAH infants with male external genitalia. After reviewing available literature, we conclude that because those extremely virlized 46,XX CAH patients who were reared male with healthy social support demonstrated satisfactory levels of social and sexual function as adults a male sex assignment should be considered in these types of infants when social and cultural environment are supportive.
How about raising them as their apparent sex, with no surgical intervention until they are competent to consent? And being prepared to switch sex of rearing as soon as it becomes obvious our initial guess was wrong?

My observation in Intersex support groups dealing with CAH is that 9 out of 10 self-identify as female. But that means 1 in 10 do not, even if they had been subject to surgery while helpless infants.

Some are glad to have had clitoral reduction surgery; others are not, they're devastated. The point is, it should be their decision, as adults or as teens.

I know I'm being tediously repetitious. But how many reports, studies, narratives from Intersexed people, medical and scientific papers will it take to prohibit surgery without consent, and permit surgery with consent?

2 comments:

Zimbel said...

But how many reports, studies, narratives from Intersexed people, medical and scientific papers will it take to prohibit surgery without consent, and permit surgery with consent?

An infinite supply. There are three routes I see to obtain the desired result:
1) Change the laws. This means convincing politicians not only that you're right, but that your issue is more important to them than any of the other issues they're dealing with. It might work if it's pushed by broad rights organizations - at least in a few countries.
2) Convince surgeons that what they're doing is wrong. That pretty much involves having people go give talks to surgeons, and hoping to convince nearly all of them.
3) Convince the medical schools that train the surgeons that what the surgeons are doing is wrong. The main advantage of this versus #2 is that fewer people need to be convinced.

M Italiano said...

I agree...and get the pscyhologists out of there. Their attemtps at identifing gender identity in kids have failed miserably.