Hello, everyone!  I am new to the board, however, I read through postings on this and a few other CAH sites every couple of months for information.  I feel I may have something to offer to others, so I will share and answer as many questions as possible due to my family’s "unique" situation - both my husband and daughter have SWCAH.  My husband, now 27, was diagnosed with SWCAH as an infant (I think at around 3 mos).  He was treated by an excellent pediatric endocrinologist and is doing well today.  However, he was not always regular with his medications as a teenager.  As a result, his endo told him at around 18 that his chances of fathering a child were very, very small due to his erratic med schedule (they actually said he wouldn’t have children ever).  A year after we married, I found out I was pregnant.  We were overjoyed, since we had been told this was impossible.  My obgyn and his dr told us not to worry, the recessive gene for CAH is so rare that the chances of me being a carrier were very low.  Wrong again - our daughter was born in June of 1998 with SWCAH.  She has been remarkably healthy - she is being treated by the same ped endo my husband was treated by.  She is literally never sick - if she gets a cold (very rarely), it is gone in a day or two tops.  She has never thrown up.  We had some "bumps" through the first year due to her premature birth, but since about age 18 mos, she has been very healthy.  We’ve been lucky.

Another reason I have chosen to post - we made the decision to have the vaginoplasty and clitoral reduction for our daughter, Allyson.  She was born at 36 wks and weighed only 4 lbs 14 oz, and had a kidney that never developed.  The cause is unknown - I was extremely careful and healthy all through my pregnancy.  I find it interesting that the adrenal gland rests on the kidney.  Her urologist concluded at around age 12 mos that the kidney should be removed, as it had never grown, was operating at only 10%, and there was the possibility of infection later in life.  Her ped urologist did the entire surgery - kidney removal, vaginoplasty (she had a uro-genital sinus - a wall needed to be built to keep her from urinating into her vagina), and clitoral reduction.  The decision was gut-wrenching, but we believe we made the right choice.  Her clitoris was very large and, as an infant, would frequently harden when I held her on my hip or her diaper would rub against it.  It was definitely uncomfortable for her, and often painful.  She looks as close to "normal" as you can get, and all of the clitoral nerves were left untouched.

I am often hurt by postings I find of women whose parents had the surgery done and they are so angry and accusatory.  As a parent, you have to make the best choice you can make for your child, and for us, that was surgery.  I believe that the surgeries of the past were not what they are today, and you need to find a compassionate, knowledgeable surgeon if you choose to go ahead with the surgery.  Ally has no "gender issues" (she’s very girlie) and I believe that she will be happy with the choice we made later in her life.  She looks just like every other little girl and will only explain her surgery to those she is truly close to, not other girls at a slumber party who notice something is different.  I struggled with my choice fearing that after surgery she would have no feeling at all in the clitoral area and that sex would be uncomfortable or painful as an adult, but I am confident that that is not the case.

Those who have questions about an adult male with SWCAH, or about the surgery, etc., I will try to answer as best I can.  I work from home and am not always available, but I will try to check in now and again.  I found some valuable information here - the color change in Florinef, for example - and hope I may be able to provide some myself.