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8. Any other personal experiences which would be helpful to people considering prenatal testing for disabilities?




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This article is from the Pregnancy Screening FAQ, by Lynn Gazis-Sax (gazissax@netcom.com) with numerous contributions by others.

8. Any other personal experiences which would be helpful to people considering prenatal testing for disabilities?

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Anonymous response 6:

I don't know how we would have reacted to a similar (or worse) AFP test
outcome in my second pregnancy. At the time, we had a son with cancer,
and couldn't have taken much more. Like I said above, *I* feel that that
borderline high AFP was the first indicator that Aaron was going to have
problems. And he did - premature birth, hearing loss, leukemia at 11
months old, and he died at age 23 months. I'm sure no doctor would
concur that those things were related, but I'll always think they were.
We were also glad to have the doctor check the fetus' growth at 26-28
weeks. It would be scary if we got bad results again (especially after
what we went through with Aaron), but we are simply the type of people
who want to know everything we can as early as we can. It helps us
prepare and cope.

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Anonymous response 8:

Remember that you can get bad news! Bring someone with you for the
test. If you get bad news you may not be able to function too well
after the test. For example, I couldn't remember the phone number
to work, to let them know I wasn't coming back afterwards.

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Anonymous response 9:

Have since learned that lots of people go through very similar
experiences with the results of these tests. Thanks to this FAQ, I
found it good to hear that there were so many people in the same
situation that had happy outcomes. Once talking to others (you never
hear any dark sides of pregnancy, only the childbirthing experiences),
I also found out that it was very common to get false negatives on the
AFP and triple screen. This was reassuring, but I still believed that
I was going to be that unlucky one of the 130.
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