re: re: New to CAH
Jan. 7th, 2007   8:10am

Absoluteyly what Stephanie says. GO TO CARES FOUNDATION. This foundation is all for CAH patients. They have so much to help you. Especially for this concern. The president of CARES name is Kelly Leight. She has a daughter with CAH and started this angel of a foundation in order help educate, and research CAH. 

My daughter is 9 with the salt wasting version of CAH. She was totally fused and her clitoris was large but the surgeon only reduced the clitoris a very little, and opened the vaginal area up. If I knew what I know now, I would have had them leave the clitoris alone totally for the small size it was. But I never had a place like CARES to research and help me ask the right questions. Now I know she would have grown into it. Some genitals are more severe, and less severe. So in my opinion, if your daughter has a small vaginal opening already, it sounds to me like it really isn’t necessary to have the surgery. A lot of times what happens with the severe cases is that they get reoccurring bladder infections and you have to have the surgery to make sure the urethra can empty better. And also on this side note, my sister in law that doesn’t have CAH or any other medical problem has an enlarged clitoris. She said she had it all her life and never thought anything of it. So keep that in mind. And when you are asking this question here, know that everyone has been affecting in different levels. Some have severly affected genitals, and some have not. 

Bottom line. Only your surgeon can give you his opinion and only you can educate yourself about CAH and about your options of surgery for your daughter. Pray on this. And good luck. This is your first big decision of MANY you will make for your daughter. I know for a fact, CARES Foundation will help you make the right choice.  

Laura
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