Since it appears I have set off a firestorm, I feel I must comment on some of the responses that my original posting has elicited.

No one is saying that the surgery is wrong.  Those of us against early surgery are simply urging that it be postponed until the child is old enough to make informed consent.

Unfortunately, when surgery is pushed on parents while the child is young, that informed consent is absent.  While the parents that chose to allow this surgery may feel they are acting in the best interest of the child, they are also forgetting that their little baby will someday grow up to be a sexual person.  There will come a day that your little baby will have sex and may find it painful or be inorgasmic due to these surgeries that were performed on her as an infant, without her consent. 

Do you want to be in the position of having to answer her questions as to why she unable to have sex because of a decision you made when she was just a little baby?  By not having this cosmetic surgery done at an early age, you will give your daughter the power over her own sexuality.  If as a young adult, she chooses to have it, then so be it.  It will be her choice, and her decision based upon informed consent.  If she chooses not to have clitoral surgery, one thing is certain; her sexual capacity will not be diminished.  If the surgery is not done, there is absolutely no danger of her physically being unable to achieve orgasm.  That is not the case if genital surgery is performed on an infant.

No one is suggesting that if there is a medically necessary reason to do surgery, it should not be done.  In CAH babies with viralization, sometimes there is a medically necessary reason to have surgery due to problems with the urethra and resulting urinary tract infections.  However, there are documented cases of surgeons going in and under the guise of fixing the UTI issue, perform a cliterectomy. 

Fortunately, these medically necessary cases are far and few between.  The overwhelming majority of genital surgeries performed on CAH infants are purely cosmetic in nature.

No one is suggesting that if the surgery is not performed, you will be unable to call your child your little girl.  No one is advocating the introduction of a third sex, or use of an asexual term.  Your little girl is your little girl, who just happens to have an enlarged clitoris.  With support, and counseling, your little girl will survive her childhood with this.  If a little boy is born with an exceptionally large penis, do you cut it off because it might cause problems down the road?  Of course you wouldn't.  Instead, it is looked upon a a sign of masculinity. 

But if little boys are born with a tiny penis (called a micropenis in medical lingo), you can bet there will be a surgeon knocking and offering to fix it.  Their solution is to build a vagina and make that little boy into a little girl.  The mindset of these doctors is that it is easier to dig a hole than to build a pole.  Think I am joking about that?  I'm not and can send you the citation with that quote put forth by an educated physician.

One of the things that the surgeons often don't tell parents is that your little girl's genitals will still look different, despite the surgery.  The support and counseling will still be necessary.  No matter how skilled the surgeon, there will still be scar tissue.  There will be dilation issues to deal with.  Scar tissue contracts. The dilators she will have to use are really nothing more than dildos.  They will be graduated in size as your daughter gets older.  When you choose to have this surgery done, realize that you will have to perform this dialation and as your daughter gets older, she will be performing it on herself.  And despite all this dilation, chances are very good that more surgery will be necessary when your daughter reaches her teens and stops growing.  It is only then that the surgery can have a chance of success.   

Someone said that this issue shouldn't even be discussed.  I disagree, because it is only through discussion that change can happen, and that well-meaning parents can be informed that the minor surgery the physician is pushing is not minor.  It is life-changing for your child.  You may not realize how life-altering it is until your child is an adult.  If discussion of this topic is squashed due to someone's queasiness of the topic, then these surgeons performing it will be allowed to continue their butchering for the sake of the parents' comfort.  Mature discussion of the issues that affect us leads to change.

That's really what it comes down to, isn't it?  The comfort of the parents, and the caregivers.  Your little girl doesn't give a damn what's between her legs until you make an issue of it. The solution to these unnecessary surgeries is counseling and support from the moment the child is born and continuing throughout childhood and the teenage years for the child, the parents, and any caregivers.

For those that think religion will guide them to the right decision, I offer the following article as comfort and reassurance:

http://www.traditionalvalues.org/oeNOWHermaphrodite.html

It's not too comforting to realize that the religious groups you turn to in a time of need regard your daughter as a hermaphrodite, is it?  It's nice to know that the Rev. Sheldon is in your corner. 

The activism of those of us against early surgery performed without informed consent of the child are making a difference.  There is a growing segment of medical providers who no longer recommend these cosmetic surgeries as the solution.  Instead, they are offering counseling and support to parents and the child. 

If you would like that names of these care-givers, please write me and I will be glad to provide this information to you.  If you are considering surgery for your little girl, write and I will be glad to provide you with the same information and studies  that Joan W offered showing that early surgeries are not successful.  I often speak publicly, as do others against these cosmetic surgeries.  If you are interested, I will be happy to let you know of an opportunity to hear what we have to say in person.  The groups that are interested in this subject are not off-the-wall groups.  Last month, I appeared at the convention of the American Psychology Assc. in San Francisco and spoke to a standing room only crowd on this issue.  Early next year myself and others with CAH will be addressing a large group (500+) second year medical students.  These are not groups we approach; they come to us asking for our input.  That should be a clue that something is not right in the current medical protocols.

Best,

Betsy