Hi Jenny!
Welcome to the group. We're a quiet bunch, but questions never go
unanswered.
My twin girls were diagnosed the day after their birth. They wouldn't
tell us their sex until after the sonogram and chromosone analysis. Because
they were premature, the masculinization (word?) wasn't as severe, so we
were pretty sure they were girls. I would suggest you get this book "My
child with CAH" (does anyone have the link? I seem to have momentarily lost
it.) It would be wonderful to help explain this all to your family. (It
explains everything in plain English...very easy to read.)
I know just how you are feeling, as does everyone on this loop. We
were all scared and full of anxiety (and occasionally have our moments
still) at first. But as you learn more, and you will, you will become much
more confident with this diagnosis. My girls are leading an extremely
active and NORMAL life,....except this whole early puberty thing caught me a
little off guard! LOL!! My girls are 12 now, are into Girl Scouts, Soccer,
Band, and being pre-teens....that one I could do without! LOL!
If someone doesn't come through with that link for you, I will check
it out in the archives of this list and get back to you. I know you'll want
to have a copy of it!
Again, welcome to the group!

Angi

----- Original Message -----
From: "Jenny Humphrey" <JHmphr3@...>
To: <CAHsupport@yahoogroups.com>
Sent: Friday, March 23, 2001 11:17 AM
Subject: [CAHsupport] My newborn was just diagnosed


> Hello everyone. My name is Jenny and I just had my second daughter on
> March 16th. The doctors initally told us that she was a boy. Shortly
> afterwards they told us they didn't know yet. The next couple days
> were full of anguish, confusion, and many tests. They finally came to
> us and told us our baby was a little girl and she had the severe salt
> wasting form of CAH. This was something my husband and I had never
> heard of and didn't know we were carrying. We have read much
> information since then and the doctors have been excellent but I
> would like to hear from people that have lived through this either
> themselves or with thier child. There are just some things books
> can't tell you. Our family members are having a hard time
> understanding this as they were all at the hospital when they said it
> was a boy. They think that there is something sexually wrong with her
> like she is a hermaprodite. Not all of them are like that but a few.
> I am not sure how to deal with them other than to try to educate them
> more. Mainly I would like to hear from others in a similar situation
> and hear how your lives have changed and much more. I worry so much
> about my daughter( whom we named Hunter) and want to be sure that I
> do everything in my ability to let her live a happy and healthy life.
>
>
>
>
>
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