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Jenny,
We opted not to have this part of the surgery done for my daughter, though it
was also recommended for her. You will find in researching this that it is a
VERY sensitive topic with high strung emotions. Do not let this sway you
from doing what you feel is best for your daughter. I for one am a very
religious person who believes strongly that God has chosen us to be parents
to these children for a reason, and I also feel we are not alone in making
the decisions for our children--God knows best, in my opinion, what is best
for our kids in the long run--He is the only one who knows the "long run" of
things. That is how we made our decision. We researched a LOT, then prayed
about what we found and thought and then went with what we felt was right for
our daughter. For us, we felt that her clitoris was not "that large" and we
felt she may be able to grow into it, and the doctor's said it may even get a
little smaller as her body began to regulate the meds. This ended up being
the right choice for our girl--hers has "shrunk" some, and she is slowly
growing into it--and her surgery was back in Feb. (she did have to go in to
have a vaginal opening created and her urethra seperated from her vaginal
canal). If my daughter someday feels the need to have this surgery done, we
will let her--but as for now, she looks like a "normal" girl to us.
However, I do know several moms with babies about the same age as my Jessie,
and they opted to have the clitoral surgery done--they felt good about it.
One of them, their daughter was so several affected by CAH that she looked as
though she had a penis and they felt that this was the best thing to do for
her. (And honestly, I may have done it too if my daughter's was larger--we
did the other surgery now, even though we could have waited, because we
didn't want to make her teen years harder on her than they will already be.
Can you imagine having to explain to your friends at the tender age of 13 why
you needed to have surgery done and missed school?) Anyhow, my friends have
been very pleased with the surgery and how well it went. This surgery is
continually changing, so unfortunately there is no research to prove if it is
a better surgery now than it used to be (most people who get upset about this
surgery are those who have been hurt by it in the past when it was done
differently). My friend says her daughter still has sensation "down
there"--as she is a normal child of that age who is into exploring what those
parts are all about. If she got no sensation, I doubt she would be exploring.
My only suggestions to you are: 1) Research this as much as you can, then
make your OWN decision, despite what others may say, and 2) If you decide to
do it, make sure you have the best surgeon your money can afford. We are
lucky here in my hometown to have a Children's Hospital with some amazing
surgeons--and it does make a big difference.
Best wishes to you in this difficult decision. I know I felt I waivered all
the way up to the surgery date, but I always knew, deep down, what was best
for my baby and that is what I went with--"mother's intuition" you can call
it, I call it "divine intuition." :)
Jenny
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