This article is from the Pregnancy Screening FAQ, by Lynn Gazis-Sax (firstname.lastname@example.org) with numerous contributions by others.
If your caregiver does not provide detailed description of what the test is
and is not, then you should complain. Everyone ought to get accurate
information before electing a test with such an emotional component.
Here are some books recommended by various people.
Sheila Kitsinger: _Your Baby, Your Way_ as a good general pregnancy guide
that has good section on AFP testing.
"I found a book in the local library on prenatal tests (again, we have
since moved so I can't give you a reference; however the title was
something like "Prenatal Testing: What You Need to Know") that actually
listed averages and ranges for the AFP levels at different points in the
pregnancy & gave some information on how those ranges corresponded to risk
"I suggest that you refer readers to a terrific book on the psychological
effect on women of prenatal testing, _The Tentative Pregnancy_ by Barbara
Rothman. (This would go in your section 7, I guess). The book was written
before AFP became common, and deals with amnio for women 35 and over, but
is really very helpful.
The running theme in the book is how women planning amnio protect
themselves by not conceptualizing the fetus as 'their baby' -- even not
feeling it kick until after the amnio results are in. Hence the title. She
talked with women with a wide range of viewpoints, from "my sister-in-law
has Down's and I would have amnio no matter what my age", to "I could never
abort or risk hurting my baby, no matter what."
The book also covers borderline diagnoses (chromosomal abnormalities that
may or may not lead to problems), knowing the baby's sex (she strongly
recommends _against_ this), the roles of husbands, doctors, and genetic
counselors in the decision-making process, and how to minimize the negative
psychological effects throughout a tested pregnancy (e.g. don't fall into
the trap of thinking negative amnio == perfect baby).
Given my experience with an AFP Down's scare, I believe that the AFP
extends this tentative pregnancy most painfully to younger women in a way
that might be called 'the on-and-off' pregnancy. In the typical AFP scare
for a woman younger than 35, you are tentative in the first trimester
because of the risk of miscarriage, then you get un-tentative and the fetus
becomes a baby to you. If your AFP then indicates a high risk of Down's,
overnight you have to distance yourself from the pregnancy again in case
you have a bad amnio result. By this time your baby is kicking, of course.
Then finally your amnio is fine, and you can go back to feeling really
pregnant again. This roller-coaster is a nightmare!
Rothman does point out that AFP can save older women from the trauma of
amnio if their results are normal."