I have a boy with CAH and do not have to make this decision, but I have no problem saying that if my child was a girl, I could not possibly choose surgery knowing the huge number of risks that my child could face in the future.  If I were meeting Dr. New, I would want to know, among other things 1) What are the possible risks that my child could  face 2) What is the likelihood that she will suffer these risks 3) What are the long-term complications of undergoing this procedure 4) What do the follow-up studies of women who have gone through this say and 5) What is the role of the pediatric endocrinologist in educating parents about the pros and cons of surgery.

With so many people having gone through this experience firsthand and shouting out about poor results; doctors themselves admitting that these procedures have been shown to be problematic; and even surgeons who actually perform these procedures saying wait if you can, it seems to me that the odds are pretty good that many children who undergo these procedures will end up suffering years from now, even if today, their surgery is deemed a "success."  I have a hard time understanding how people can be so confident that the same thing will not happen to their daughter. So often on this Board, we complain about not enough research being done on CAH and lack of attention from the medical community.  Yet, when new studies and research come along (such as those cited recently and in the past by Joan, Danette, and others) that happens to be not what we want to hear, we just very conveniently ignore them.

I am always surprised when, in discussing this issue, people are bothered by "negative" comments about surgery.  If it was my daughter, I'd want to know as MANY negatives as I could possibly know beforehand, so that I'd be confident I wasn't unwittingly making a mistake.  How often, when we are forced to make a decision with an uncertain outcome, do we say we wish we had a "crystal ball" to look into the future?  To me, these CAH adult women ARE the crystal ball---they are our daughters all grown up and while it's true that not every one of them feels the same way, a significant enough number of them do that if it were my daughter, I would have to stop to consider what they are trying to tell me.  And all I can think is what possible motive could they have to say what they are saying besides to right and injustice and warn unsuspecting people of the potential pitfalls down the road? 

Good luck with your meeting, Joan.  I think it takes a lot of guts to do what you are doing.