Betsy
07-24-02, 05:16 PM
I posted this recently on cah.org in response to a mother whose 5 or 6 year daughter has already undergone 4 surgeries with more to come on her genitals. Today, I see a post from a mother saying they are making surgery plans for her five month old daughter. Why don't they get it???? Do they think their child will be the one who proves everyone else wrong?
Here's what I wrote a couple of weeks back:
Hi Judy,
Regarding the term intersex and CAH...that is really a question for the medical community as they are the ones who use it in relation to CAH, along with the myriad of other conditions that fall under the umbrella of intersex. As simple search on google will illustrate that.
As for the surgery...you don't say why four surgeries plus more future ones were very necessary. The vast majority of genital surgeries being performed on CAH girls are anything but necessary. They are cosmetic in nature, meant only to put the parents at ease. I doubt your 5 or 6 year old daughter cares what her genitals look like. You also mention menstruation. Fact is, there isn't a 5 or 6 year old girl in the world that has any use for a vagina. Is she in puberty at such a young age?
The doctors who perform these surgeries make it sound so easy...and that there is an easy fix for her atypical genitals. It's not an easy fix...witness your own daughter's 4 surgeries thus far, with more to come, for a cosmetic issue. Would you choose to subject your daughter to 4+ surgeries if her ears were large, or maybe her nose was big? Of course not! Yet, when it comes to genitals, something that is so private and seen only by the child and the closest of caregivers, there is a quick rush to a cosmetic surgery fix.
Don't believe for a minute the fiction you have likely heard that she won't remember them. She will, and she will be reminded every single time some doctor wants to take a little look-see at her most private parts. Many a women with CAH will tell you about wondering what was so wrong with her that it needed to be fixed and elicits so much interest!
In my own activism, and the activism of others, there has yet to be a women with CAH who has come forth and said she was glad her parents made that choice for her. Yet, there are multitudes of women who are not happy, and downright angry that her body was mutilated without her own consent. The reasons are many: the surgery leaves many without the ability to enjoy good sex and inorgasmic, pain upon sex arousal, incontinence problems, urinary problems where there were none, scar tissues, unslightly results (much more so than the sight of a big clit). It's really a most base thing when the mutilated girls grow up and become sexually active: that the way they looked when they were born was altered at the sacrifice of her sexual health as an adult. The surgery does not work. It does not make a child's genitals look "normal"; it makes a child's genitals look like they have surgically altered...the results are anything but "normal"
As Danny mentioned, there are many CAH women who escaped surgery and immensely enjoy their sexual pleasures with a large clit and wouldn't think of having surgery done on their genitals. There are some who were fortunate to be able to make their own decisions and gave informed consent to surgery as adults, sometimes with satisfactory results sometimes not.
Additionally, a small but not insignificant number of girls with CAH and other intersex conditions do end up transitioning FTM. In fact for some CAH people, it's actually a very easy process. On the remote chance that your daughter or any CAH daughter finds that is a desire of hers as a young adult, why take away what she had and would find useful in that process. The stories I've heard from those that have (several in fact) are even sadder than the stories that CAH women have to tell. What little they had to begin with is permanently gone, thrown in the trash by some "well-meaning" doctor when he was just a baby.
My own clit was thrown in the trash when I was only 4 months old. It wasn't diseased, it was just big. Some doctor in Buffalo, NY at the CHOB felt I could never be happy with a big clit. Did he ask me? No...I was only 4 months old. Did he show my parents proof? Nope...there wasn't any (and there still isn't any). Did he call when I was an adult to see how I was doing? Nope. Yet, if you called him up today and asked if it was a success, he would most certainly lie and tell you yes. How can that be when he never bothered to ask? He may even lie to you and tell you another whopper...that all his surgeries were a success. Ask for proof. Ask for the follow-up studies done on adult women. He won't be able to produce them because they've never been done.
There has not been over the course of the 50-60 years or so that this surgery has been done any widespread, large studies on survivors of this mutilations. The doctors do these surgeries on infants and small children and then don't bother to follow-up when the child becomes a sexually active adult. This leaves these surgeries in an experimental realm. Of the small studies that are done, they show an astonishing 89% resurgery rate (Minto, 2001). Often, parents are not told this, and if they are not, they have been outright lied to. The doctors doing these surgeries know this, but they don't share it with you. Any other surgical field with such a high failure rate would see an immediate halt to further surgeries. Yet, the travesty of genital surgeries on CAH girls continues to this day.
Best,
Betsy Driver http//www.bodieslikeours.org
Here's what I wrote a couple of weeks back:
Hi Judy,
Regarding the term intersex and CAH...that is really a question for the medical community as they are the ones who use it in relation to CAH, along with the myriad of other conditions that fall under the umbrella of intersex. As simple search on google will illustrate that.
As for the surgery...you don't say why four surgeries plus more future ones were very necessary. The vast majority of genital surgeries being performed on CAH girls are anything but necessary. They are cosmetic in nature, meant only to put the parents at ease. I doubt your 5 or 6 year old daughter cares what her genitals look like. You also mention menstruation. Fact is, there isn't a 5 or 6 year old girl in the world that has any use for a vagina. Is she in puberty at such a young age?
The doctors who perform these surgeries make it sound so easy...and that there is an easy fix for her atypical genitals. It's not an easy fix...witness your own daughter's 4 surgeries thus far, with more to come, for a cosmetic issue. Would you choose to subject your daughter to 4+ surgeries if her ears were large, or maybe her nose was big? Of course not! Yet, when it comes to genitals, something that is so private and seen only by the child and the closest of caregivers, there is a quick rush to a cosmetic surgery fix.
Don't believe for a minute the fiction you have likely heard that she won't remember them. She will, and she will be reminded every single time some doctor wants to take a little look-see at her most private parts. Many a women with CAH will tell you about wondering what was so wrong with her that it needed to be fixed and elicits so much interest!
In my own activism, and the activism of others, there has yet to be a women with CAH who has come forth and said she was glad her parents made that choice for her. Yet, there are multitudes of women who are not happy, and downright angry that her body was mutilated without her own consent. The reasons are many: the surgery leaves many without the ability to enjoy good sex and inorgasmic, pain upon sex arousal, incontinence problems, urinary problems where there were none, scar tissues, unslightly results (much more so than the sight of a big clit). It's really a most base thing when the mutilated girls grow up and become sexually active: that the way they looked when they were born was altered at the sacrifice of her sexual health as an adult. The surgery does not work. It does not make a child's genitals look "normal"; it makes a child's genitals look like they have surgically altered...the results are anything but "normal"
As Danny mentioned, there are many CAH women who escaped surgery and immensely enjoy their sexual pleasures with a large clit and wouldn't think of having surgery done on their genitals. There are some who were fortunate to be able to make their own decisions and gave informed consent to surgery as adults, sometimes with satisfactory results sometimes not.
Additionally, a small but not insignificant number of girls with CAH and other intersex conditions do end up transitioning FTM. In fact for some CAH people, it's actually a very easy process. On the remote chance that your daughter or any CAH daughter finds that is a desire of hers as a young adult, why take away what she had and would find useful in that process. The stories I've heard from those that have (several in fact) are even sadder than the stories that CAH women have to tell. What little they had to begin with is permanently gone, thrown in the trash by some "well-meaning" doctor when he was just a baby.
My own clit was thrown in the trash when I was only 4 months old. It wasn't diseased, it was just big. Some doctor in Buffalo, NY at the CHOB felt I could never be happy with a big clit. Did he ask me? No...I was only 4 months old. Did he show my parents proof? Nope...there wasn't any (and there still isn't any). Did he call when I was an adult to see how I was doing? Nope. Yet, if you called him up today and asked if it was a success, he would most certainly lie and tell you yes. How can that be when he never bothered to ask? He may even lie to you and tell you another whopper...that all his surgeries were a success. Ask for proof. Ask for the follow-up studies done on adult women. He won't be able to produce them because they've never been done.
There has not been over the course of the 50-60 years or so that this surgery has been done any widespread, large studies on survivors of this mutilations. The doctors do these surgeries on infants and small children and then don't bother to follow-up when the child becomes a sexually active adult. This leaves these surgeries in an experimental realm. Of the small studies that are done, they show an astonishing 89% resurgery rate (Minto, 2001). Often, parents are not told this, and if they are not, they have been outright lied to. The doctors doing these surgeries know this, but they don't share it with you. Any other surgical field with such a high failure rate would see an immediate halt to further surgeries. Yet, the travesty of genital surgeries on CAH girls continues to this day.
Best,
Betsy Driver http//www.bodieslikeours.org