Dear Liz,

Each case is different- There is going to be people that posts that are going to write that everything was wonderful but that was for their child’s case and the way that child was born- others might bring up that other surgeries needed to be done afterwards. Two children with the same degree of virilization may have very different outcomes as was the case w/ me and someone else w/ CAH.

I’m giving you plans of action that I had for myself. With my cancer - I hoped for the best and planned for the worst - then I let go.

Why are you worried? Has the surgeon answered all your questions ? given you the pros and also the cons?

This is an adrenal gland defect that is being corrected- If she is at a teaching hospital please don’t let them do finger dialations, just taking a peek, or pulling apart the clitoral recession, labia/vaginoplasty that they did to her-   without informing her up front that they are going to do that then Make the doctors and students ask HER before they can touch her and that way it’s a little less like molestation. Don’t let them take pictures or do video taping unless you are comfortable her pictures could turn up in some book or a power point that can be accesed from the internet.

You all must have the surgeries and later if she is virlized as much as me a hole needs to be created for period discharge anyway. These surgeries help us fit into the social norm - what other choice is there? She may or may not like how she is born but it’s not her choice about her body .....so if something happens it happens and most likely everything will be fine. I went into the hospital @ three for "the surgery" and picked up a viral infection from them ......they cut me loose until five and got me then.....so I was ok for public school. Genital surgery - from the experts is a social emergency...so I hope you will feel les stresses over all this after it’s done. She will make it. She came into the world w/ CAH and survived so far ...surgery is just another bump in the road. They say that they’ve gotten better with saving the nerve bundle and I read in ten years they will know for sure and that if you are at the top doc. Any bandages? put her in the tub to let them get soft and let her peal them off.

Surgery is always risk- Medicine isn’t perfect .....My Havard Educated doctor created a blockage because of the surgery that was done and had to where a cathader for months  I hate cathader to this day....I’m lucky it healed and only a little leakage.

I figure w/ micro surgery things are lots better. Do you have trust and faith in this surgeon?

She’s going through all this and just a baby ....  is her health in danger as of now?