View Full Version : Associated Press: Surgery May Be Hasty for Unclear Gender
http://story.news.yahoo.com/news?tmpl=story&cid=534&e=3&u=/ap/20050218/ap_on_he_me/babies_unclear_gender
Nice article but if you want to vomit you should read this:
http://post.news.messages.yahoo.com/bbs?.mm=NEWS&action=l&ft=1&board=37138530&sid=37138530&title=Surgery%20May%20Be%20Hasty%20for%20Unclear%20Gender%0A&tid=apbabiesuncleargender&date=02-18-2005&url=story.news.yahoo.com%2Fnews%3Ftmpl%3Dstory%26u%3D%2Fap%2F20050218%2Fap_on_he_me%2Fbabies_unclear_gender_1&.sig=2.U3qspbnHr4sxZlxEoUkQ--
Groeten, Miriam
============================
Surgery May Be Hasty for Unclear Gender
Fri Feb 18, 5:09 PM ET Health - AP
By LAURAN NEERGAARD, AP Medical Writer
WASHINGTON - It's the first question new parents hear: girl or boy? But hundreds of babies are born each year where the gender isn't clear. Prompt surgery to assign one was once the norm.
But gender depends on more than anatomy or hormones. It also seems to stem from the very earliest brain development, researchers said Friday in urging doctors to hold off on the knife until children can determine their own sex.
"To discover who or what a child is ... you have to ask them," Dr. William Reiner of the Oklahoma University Health Science Center told a meeting of the American Association for the Advancement of Science (news - web sites).
"There is no one biological parameter that clearly defines sex," added Dr. Eric Vilain of the University of California, Los Angeles, whose research suggests gender is genetically hard-wired into the brain before birth — regardless of which genitalia develop.
The issue is "intersex," the name for numerous conditions that result in roughly one in 4,000 babies born with both male and female traits.
One of the more common is congenital adrenal hyperplasia. In such cases, genetic girls with XX chromosomes are exposed in the womb to such high levels of androgen — the hormone that triggers male development — that they appear male externally even if they have female reproductive organs. A different condition leaves genetic males less responsive to androgen during development, so they're born without a penis.
The parents must pick a gender somehow, to know what to call their child and because gender is required on a birth certificate. So specialists check non-obvious factors such as which sex chromosomes the child has and levels of sex hormones in the blood.
But Vilain's research suggests there are factors at work that can't be measured. The scientific dogma used to be that hormones alone could "masculinize" the brain, he said. But he identified 54 genes that work differently in the brains of male and female mouse embryos just 10 days after conception — before sex hormones are ever produced.
Doctors also once thought that how people were raised and their genitalia were enough to determine gender, said Reiner, who as a urologist performed sex-assignment surgeries on babies.
But Reiner began seeing children who had been assigned to one sex as babies and a few years later began identifying themselves as the other. He re-trained as a psychiatrist to study these children.
His latest review of 94 intersex children found over half of the genetic males "transitioned" to become boys despite being raised as girls and undergoing female surgical sex assignment.
How? As early as age 4 1/2, the children would suddenly say, "I'm a boy," or pick a boy's name, Reiner said.
Hence his advice to parents to think hard before agreeing to surgery for an intersex baby: Dealing with the social trauma of switching gender later is enough without the issue of surgery that can't be reversed.
Aside from the emotional trauma of such a switch are legal issues.
Virginia Harmon of Chevy Chase, Md., was born with Klinefelter Syndrome, where instead of the X and Y chromosome of males, people have an extra X chromosome. She was raised as a boy, but at age 14 began developing breasts and "began negotiating with my parents" to transition to a girl. At 25, she had female sex-assignment surgery.
But law in Texas, where she was born, doesn't allow her to change her birth certificate, which still states that she is male — so she couldn't marry a man there.
Indeed, most U.S. law assumes that everyone is clearly male or female, putting up hurdles for everything from name changes to marriage for intersex patients assigned the wrong gender, said law professor Susan Becker of Cleveland State University.
So what should parents do? Get as much information as possible on the child's physical and genetic condition, Reiner advises. He puts parents in touch with the Intersex Society of North America to hear personal stories.
And more doctors are putting off sex-assignment surgery, he said. A recent survey of pediatric urologists found two-thirds would call genetically male babies boys even if they have no penis — while five years ago almost all would have recommended raising them as girls.
"Then if at age 12 they say, 'No, I'm a girl,' at least you haven't damaged anything," he said.
___
On the Net:
Intersex Society of North America: http://www.isna.org
Hi Miriam,
Thanks for the article link. I agree that it is a good article. It's good to see that more and more doctors, like Dr. William Reiner, are saying that early infant genital surgery can be delayed without harming an intersex child. Indeed, delaying or not performing surgery can prevent a child being mistakenly assigned a sex that does not match the gender identity that the child will develop when growing up. (Not to mention the fact that surgery often damages sexuality.) Dr. Reiner's research shows that about half of boys assigned a female sex later want to identify as male. I only have a very basic knowledge of statistics, but if half the boys are assigned wrong, that is no better than randomly picking out children in the general population, and assigning them a sex on the basis of tossing a coin. If you play the game of guessing which side of a coin will show up, you will also be wrong half the time. So, to my horror, it seems that the "science" of gender prediction is really no better than tossing a coin, at least in the cases that Dr. Reiner studied. Infant surgical sex assignment does not give you a chance to re-toss the coin. It's not a game, which is something I am still struggling with in my life.
But no matter how good the article is, I guess that there will always be people who will see us as "freaks of nature". One person responding to the article said that intersex children should be put in a trash compactor. Please pass the vomit bag.
Peter
Miriam,
Thanks for the article. I have been holding this question for several months waiting for an appropriate forum. Perhaps now is the time to ask.
I had previously made an inquiry to ISNA with regard to their Mission Statement. The fifth point is "All children should be assigned as boy or girl, without early surgery." I asked if perhaps the emphasis of that point might better stress the delay of unwarrented surgery rather than what seemed to be a mandate to make an assignment as either boy or girl. Our conversation was cordial, but I was politely dismissed.
So my question is: "Is it wrong to raise a baby gender neutral until they express themselves in a direction they desire?"
I would REALLY like to hear some discussion/debate on this matter. I realize that there are those circumstances where the outcome is more predicable than others, but from what was cited above, others might not be quite so clear early on.
Respectfully, Meadow
While not wanting to get into another long drawn debate about what is IS and what is not, and while I in no way want my post to come across as critical of Reiner's work (I am not), it should be noted that his research revolves around kids with CE.
While classlifying CE as IS or not (most medical types do not) is academic, particularly for those born with it (Nat!...you still around?), it's a bit of inaccurate reporting by the AP reporter and then the second AP reporter who made it a bit more sexy. Of course, that inaccuracies began right at the press office of the AAAP who held the briefing and sent out a somewhat misleading press advisory.
It's great the people are paying attention to the fact that kids should not be surgically changed or sex-assigned in childhood, however I wish it were actual intersex conditions being used to make that claim. It's not that are not out there---they are, but no one yet has done a study on it, and scientists like numbers and not anecdotal evidence.
Granted, one of the articles did include a quote by a woman with KS, but the symposium seemed to focus quite a bit on surgically assigning gender at birth and most with KS are assigned male without surgery and unless I am incorrect, most with KS remain male their entire lives. Again, bad reporting by someone who was fed a line by a press office, and a reporter that didn't spend even some basic time getting his or facts correct.
So my question is: "Is it wrong to raise a baby gender neutral until they express themselves in a direction they desire?"
I think so. Gender assignment is for the most part a legal and social requirement. Not assigning a gender based upon the most likely outcome with the understanding it may wrong, without surgically reinforcing it is probably the best thing in my mind.
Neutral gender gives rise to claims that advocates want kids without gender, a third gender, or whatever. Having a physician suggest to parents that they can't tell the world boy or girl would probably be more damaging than any physical issues involved because it may end up leading to even earlier surgery by parents demanding "just fix it, we gotta tell our friends something" Unless you can also overcome shame and secrecy beforehand, it wouldn't work.
The other issue is you add more stigma to both child and family. 999 of the other kids are coming with a pink or blue blanket, and not assigning at least a gender means that the IS kid gets sent home with a yellow one...naw...
Betsy
Sunshine1
02-20-05, 01:41 PM
Hi Betsy,
I was under the impression bases on reading prior research that women w/ CAH don't want to change gender into males any more than than someone without CAH would.
Wanting to match chromosomes is the avererage instead of feeling like the opposite gender. This also brings to mind Lisa Lee the singer raised male that recently found out about CAH and imediatly wanted to correct the outside to match her inside and always felt female. I don't feel this was the same as trannsexualism but rather a medical condition that wasn't picked up. People with a partial cortisol block can survive but medically are at danger for no being able to fight off pysical stress as well as someone with a full working adrenal gland or being helped with cortisone.
I don't find the relevence of CAH in this article with most girls born with CAH only having enlarged clitorises and not the ambiguous or straight out male looking external genitals which is rare in CAH but also I've read that girls with CAH and external genitals that look male are from past studies known to identify as female regardless of what is between their legs and I can vouch for that one. I applaud your efort to stop surgries on enlarged clitorises and I know that the top docotrs lean toward your way with that.
I don't see how CAH should be used in a gender article and IT MAKES ME FUME TO SEE yet again a link for the ISNA under this article. I'm just trying to understand and not be just angry See Peter ...I'm trying.
As for the yahoo list based on the information in that article or lack of it, I really don't blame some of them for having the responses that they did.
The person that made the "trash compactor" comment also in a later post wrote that a chld like this should be "aborted or given up for adoption because it isn't worth it" although insensitive I really can understand why he wrote that because the slant of the article used the condiitons like something out of a freak show and I was given up for adoption because of CAH while in reality CAH since it was used in that article is easier to manage than diabetes but that article didn't even go into the medical part of it so that it's a moot point anyway but to Meadow it was easy to see what gender that I leaned towards by age three also but how I was born didn't bother me. Good for you for asking the ISNA that question and It's a shame that they dismissed what you had to say because I agree with you. I don't feel that the surgery done to me however archaic the techology at the time was "unwarrented" although I do feel that surgery on a female w/ just an enlarged clitoris is.
Maybe, I was one of the first that didn't have this to be a social emergency because my phenoype and genotype was correctedto match at age five. I think my feelings about all this would be different if I had another type of condition and I didn't find out anything until my 40's or 50's.
Peace
I was under the impression bases on reading prior research that women w/ CAH don't want to change gender into males any more than than someone without CAH would.
Well, while most do, a good number do not. Sherri Berenbaum is the main researcher in regards to gender/CAH and she recruits lab rats exclusively from clinics and from past patient rolls. However, I know many with CAH who are XX and now identify as male. From personal conversation or correspandance, I am confident they do have CAH. I also have stuff by others who claim to have CAH and now identify, however there is often some key stuff written or said that doesn't quite mesh with CAH. That's not always the case, but I have seen it.
My personal belief from past correspondance and hypothesis is that those who are identifying as male are not making themselves available to be Ms. Berenbaum's lab rats because they have no desire to further subject themselves to more medical abuse, real or perceived.
You also mentioned chromosomes. Chromosomes actually have very little to do with gender identity. In any type of intersex, I don't think it is transex at all and I suspect that those who do identify in a way other than how they were raised would not id as trans either. I also don't think that a gender ID not matching chomosomes is transsex in many cases, particularly when it comes to intersex. Nor does genital appearance dictate gender.
That last statement about genital appearance dictating gender is what has causes many a person with intersex to be medically mutilated and if it were the case, those with CAH who had their clits amputated or altered in any way would never identify as male, and it is likely that transex would not exist.
As far as wondering how CAH can be used in a gender article, perhaps asking someone with CAH not identifying in the gender they were raised could answer it better. I think it is pretty clear how it can be used--anytime there is a chance a person will not identify in the gender being reinforced or change d through unreversible surgery, it shouldn't be done. Frankly, it should never be done, but even more so when there are potential gender issues down the line. Surgery should not be used to reinforce gender and particularly with CAH, this is true. Surgery is done on girls with CAH because the belief of some parents and doctors is that girls with big clits will have gender questions, and that woman with big clits would be accepted by any future husband (another assumption---that she won't be lesbian ).
Regarding isna, would you be saying the same thing if it was BLO linked in the article? I realize you have a personal gripe about ISNA, however I think you are being seriously unfair to the excellent work they are doing---for all people born with an intersex condition. If it wasn't for ISNA, the may not even be an intersex movement and the status quo of even more shame and secrecy would be even more prevelant.
I have suggested to you and in the past, if you think that CAH should not be included and that the advocacy movement unfairly includes it, consider starting an organization and becoming your own advocate. I can vouch for how satisfying it is (but be warned---it's also a ton of work and generally doesn't pay, if it does at all)
The AAP (Amer. Acad. of Pediatrics) still considers ambiguous genitals a social emergency. It was written into their policy in 2000 and hasn't changed.
Recent medical quotes actually include the following:
ACCORDING TO PHYSICIAN JOHN HUTSON, “AFTER STILLBIRTH, GENITAL ANOMALY IS THE MOST SERIOUS PROBLEM WITH A BABY, AS IT THREATENS THE WHOLE FABRIC OF THE PERSONALITY AND LIFE OF THE PERSON. THE TRAUMA OF DISCOVERING A GENITAL ANOMALY IN THE LABOUR WARD IS GREAT FOR BOTH PARENTS AND DOCTOR”
and
GREAT ORMOND STREET UROLOGIST PETER CUCKOW HAS CLAIMED “THIS [AMBIGUOUS GENITALIA] IS VERY DISTRESSING TO THE FAMILY, AND SURGERY IS AVAILABLE TO MAKE THAT APPEARANCE MORE ACCEPTABLE”
(sorry for the caps---rather than pulling the paper, I took it out of my speech for the symposium this week and it's written in caps to make it easier to read)
You tell me, does CAH fall into their distress? And notice that neither is particularly concerned about the child his or herself.
Did you ever consider the possibility that surgery wasn't done on you until age 5 because those involved in your care wanted to know what gender you were identifying as before doing it? If that is so, is CAH still not a gender issue?
Betsy
Sophie338
02-21-05, 03:14 PM
Hello :partysmil
Well norm borns who want to put kids in trash cans because they are not perfect, are themselves the real dangerous waste of genetic material. that aside.
There was a rather cryptic statement at the end of one article covering this, Quoting Reiner,
So what should parents do? Get as much information as possible on the
child's physical and genetic condition, Reiner advises. He puts parents in
touch with the Intersex Society of North America to hear personal stories.
And more doctors are putting off sex-assignment surgery, he said. A recent
survey of pediatric urologists found two-thirds would call genetically male
babies boys even if they have no penis -- while five years ago almost all
would have recommended raising them as girls.
"Then if at age 12 they say, No, I'm a girl,' at least you haven't damaged
anything," he said.
Which puzzlingly suggests that somene born with CAIS would be raised as male on the advice of these urologists. And the comment concludes with
"no Im a girl" etc.
I know Reiner is working with specific situations, And does not quite support the "man man man" agenda. but I wonder if they may be some subtle problems with respect to the media coverage. I will be honest the "Only feminising surgery ever happened" and "Everyone wants to be a boy" seems to persist in many of the press releases. I am just wondering why
this is so. With CAIS (People who would under the described scheme of things would be facing more confusion on top of what they already have to deal with).
I think that having read both Vilain and Reiner clearly on these issues the spin does not originate with them. but the media does seem a little eager to perpetuate a certain gender bias, even though the people concerend seem to have been re-evaluating this a little just lately.
i sometimes thing Colapinto did a lot to make this happen, his "XY = mentally male" line of argument did make everyone think in terms of boys suffering penile amputation and little else. And it seems to have mutated into "CAH girls want to be boys" somewhere, and now seems to (In the media) have mutated further into "Raise a girl with CAIS as a boy" pretty much.
What I glean from Vilain and Reiner is that they are adopting a more gender neutral approach "There is not set biological marker for sex" is a clear indication that they are reading things reasonably. The press are somehow garbling it.
Shalom
Sophie.
Meadow wrote:
<< I had previously made an inquiry to ISNA with regard to their Mission Statement. The fifth point is "All children should be assigned as boy or girl, without early surgery." >>
What they mean is that as long as our society insists on assigning every child as male or female, intersex children should not be made an exception.
The ethic of assigning gender on a child should be discussed further, but that should be a separate discussion from intersex.
The last thing I want to see happen is intersex children being used as guinea pigs to test out the latest gender theory. It's either all children are assigned genders or none--intersex children shouldn't be singled out and treated differently.
Betsy wrote:
<< It's great the people are paying attention to the fact that kids should not be surgically changed or sex-assigned in childhood, however I wish it were actual intersex conditions being used to make that claim. >>
Right. Reiner's study doesn't actually show that children shouldn't be surgically "normalized"--it only shows that when a child is chromosomally and hormonally male, they shouldn't assign that child to the female gender. Nothing else is proven.
Sunshine1:
<< I was under the impression bases on reading prior research that women w/ CAH don't want to change gender into males any more than than someone without CAH would. >>
I've read papers that make this claim, but I seriously doubt that... The problem with these studies is that the sample is usually too small and selective to answer this question...
Sophie338 wrote:
<< Which puzzlingly suggests that somene born with CAIS would be raised as male on the advice of these urologists. >>
Let's give him a benefit of doubt here: obviously, Reiner wouldn't actually suggest such a thing. It's possible that he may have mis-spoke here, but it's more likely that the reporter misquoted him.
MelissP
02-21-05, 08:45 PM
i sometimes thing Colapinto did a lot to make this happen, his "XY = mentally male" line of argument did make everyone think in terms of boys suffering penile amputation and little else. And it seems to have mutated into "CAH girls want to be boys" somewhere, and now seems to (In the media) have mutated further into "Raise a girl with CAIS as a boy" pretty much.
Of course, all CAH girls by rights ought to have to opportunity to become
as messed up as I am. ??
I once was browsing a medical database (which I can't find again) which
had a very old research paper (mid 60's, I think) where they claimed that
there was {no trouble} with raising CAH girls as boys, and that the child
would enjoy the "natural advantages" of a male upbringing. If anyone can
find me that paper again, I'd be ever so grateful ... :->
Mel
Meliss,
I am aware of that study. In fact, my mom told me before she died that John Money had approached her and my dad about doing the same with me, a suggestion I am grateful they dismissed. When she told me about it after she was forced to confront her own issues as I started to speak out, she said the biggest issue was that he came across as "an arrogant bastard" Those were her exact words and my mom wasn't one to use curse words, even going so far as getting mad at me if I used damn or friggen (because she knew what I really meant :interesti )
I've started a new thread at Emi's suggestion with Meadow's musing about gender free issues.
Betsy
Sophie338
02-22-05, 07:16 AM
Hi Emi :ARMS1:
Sophie338 wrote:
<< Which puzzlingly suggests that somene born with CAIS would be raised as male on the advice of these urologists. >>
Let's give him a benefit of doubt here: obviously, Reiner wouldn't actually suggest such a thing. It's possible that he may have mis-spoke here, but it's more likely that the reporter misquoted him.
I agree with you, this is what I am thinking, The main article was very positive. but journalists have this tendancy to place sentances and quotes out of context. I think Reiner was misquoted for sure.
Shalom
Sophie
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