Congenital Adrenal Hyperplasia

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I usually donít post about this........... Main Archives Page2004
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I usually donít post about this...........
Oct. 6th, 2004   9:25pm

I have been reading these message boards for quite a few years now and I am always interested in reading the posts about corrective surgery because I have a SWCAH daughter who was born with a moderate case of virilization.  My husband and I chose the surgery for my daughter-yes WE chose it.  For us, it was more about the issues of her not being able to urinate properly and chronic urinary tract infections that had her constantly in the hospital.  I cried during the first few months of my daughters life when 6-8 times a day, I had to lube up a tiny catheter and insert it just below her enlarged clitoris to try and drain the urine that was collecting inside her.  Sometimes I was lucky, others I was not and had to run to the urologist to have him do it because she would get so full and uncomfortable and cry all the time.   Our urologist had mentioned to us that when she was old enough to go under anesthesia, she could have a procedure done that would fix her vagina and urethra.  Then, as we got closer to surgery, the doctor would mention some cosmetic surgey(a clitoral reduction) that he "might as well perform while he was in there" since he had to separate her labia to get to the area to do the vaginoplasty.  We thought we asked all the questions we needed to-he said he had done many of these surgeries and so we signed up.  At 2 months old, she had a clitoral reduction and he separated her labia, and created inner labia for her as she had none.  Then at 4 months old she had a vaginoplasty.  After all these surgeries, she was doing much better and there was not a soul in the world that could convince me that I did the wrong thing for my daughter.  I was sure I had done the right thing for her and that when she got older, I would explain it all to her and she would see hwo we had made the right decision.

And then I found this board.  This board has been a wealth of information for me many times.  It was also my reality check.  After reading so many stories from adult women who had been through the same surgeries as children and were now having problems in adulthood, I began to question whether or not I had done the right thing for my daughter.  Did I have to choose the clitoral reduction?  Will she have trouble with sensations and orgasm as an adult woman?  Should I have let her make her own decision?  I have cried many times wondering whether or not I really did do the right thing for her and whether or not she will suffer as an adult because of the choices I made for her as an infant.  I donít even think the issue of social acceptance or shame about looking different or being teased for being different looking was ever a thought in my head when I made my choice.  Her case was not that severe, so perhaps that issue was not as obvious for us as it may have been for some others.  And frankly, she gets teased anyway about other things right now at the age of 7.  Thatís just life.  And we deal with it.  No matter what the issue, we deal with it.  And we would have found a way to deal with it if she were "different" from other girls physically. 

I suppose my point is this.  My daughter did have the surgery.  She will most definitely need another surgery in a few years-this was explained to us early on after the first surgery.  I thought I knew all there was to know when I made the decision to do her surgery.  I wished I had the input of some of the adult CAH women on this board at the time, to give me some perspective and maybe open my eyes to issues and questions I had never thought of.  I wonít know how it has affected my daughter emotionally or physically until she is older.  I only hope that she understands that I tried to do what was best for her health and well being with the information I had at the time.  I appreciate all the views and opinions expressed on this subject and I realize that I donít have all the answers.


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