Re: Re: Re: Meeting with Dr. New
2/8/01 10:31 PM
Joan, I must say that I applaud your efforts in making a change for the better in regards to the treatment and surgical proceedures currently available to girls with CAH. I know that this subject is extremely difficult for you as well as very painful. I also know that you have only good intentions and speak from a very informed point of view. Like Laura, you don't want what happened to you to happen to even one more child. You are stepping way out of your comfort level and trying to do something about these surgeries that leave many of these girls without the feelings that others take for granted. Some of them have also reported that they have ended up more disfigured than prior to the surgery. I strongly believe that only good can come out of your actions if only to make the doctors pay more attention to the way they perform the surgery. From what I have read on this board, not one of the women who say they lost feeling were ever aware that there could or would be loss of sensation. From what Dr. New has stated to you, the doctors aren't aware that this is even a problem. Perhaps now a change will begin, albeit a bit late for you and the number of others I have seen post on Danette's board. I truly feel we owe you a debt of gratitude for addressing this extremely sensitive subject. I, too am a mother of a son and hesitated before posting this message. But, I can definately say that if I was a mother facing this type of decision, I would welcome any and all information that is out there. I know, without question, that the decisions we all make for our children come from the purest love that there is. I am also grateful for a board like this where we can all share our deepest thoughts and concerns yet know that it only comes from a good and loving place. If your post serve only to make us think twice about the surgery or pump the surgeons for more information, then it is all good. My thoughts and prayers will be with you as you meet with Dr. New. I hope for the sake of all the future girls that will be born with virilizing CAH, that she listens to you and, at the very least, we see a dramatic change in the way that ALL the surgeries are performed in the future.
LynnT
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