Everything was going well until my doctor asked me if I wanted the MSAFP blood test, which could detect Down Syndrome and spina bifida. I was still pretty naive at that point, even though I had become nominally involved in the pro-life movement by that time. I was still the kind of person that did not question doctors and willingly went along with most tests which I thought were standard. And so I agreed to the MSAFP test, as I had with my pregnancy with my son.
The test results came back as abnormal for spina bifida. I have miscarried several babies since my daughter was born, and I still remember the chill that ran down my spine when my doctor called to give me the MSAFP test results. It was the same chill that ran down my spine when I was told in 1995 while pregnant with yet another daughter, "I'm so sorry, we can't find the baby's heartbeat."
I was not yet on the Internet, and so I asked a close friend who was on it if he could do some research for me on spina bifida, so that I could learn as much as possible about it and be fully prepared for life with a child that has this disability. My doctor suggested a level 2 ultrasound to confirm the findings of the MSAFP, and I agreed to it. His face became grave as he did the ultrasound. He said my daughter seemed to have "a flat forehead" and when I asked what that meant, he said, "well, it could mean anencephaly". He also commented that her spine "seems to be open at the base".
He next suggested an amniocentesis, but I refused this because I had heard it can trigger miscarriage. I finally put my foot down and refused a test. I couldn't believe it was me talking! My insurance company wanted me to have the amnio, but because I refused the one test that (they said) could have given answers with 99% accuracy, they would not pay for many ultrasounds over the course of the rest of my pregnancy.
And so I spent the remainder of my pregnancy assuming that my daughter would be born either stillborn or die soon after birth (if she had anencephaly), or severely disabled (if she had spina bifida). I was advised to prepare myself for the worst, and I did. My daughter was born in September of 1993, in absolutely perfect health. My doctor was surprised; they'd had a pediatric specialist on hand, prepared to assist with attending to a severely disabled child, and also a counselor who had talked to us to prepare us for life (or death) with a disabled child. We ended up not needing either one.
Because of my horrendous experience, I have become much more of a self-advocate as a patient, and I now refuse all prenatal testing involving invasive procedures or largely inaccurate results (such as the MSAFP, which I have since learned OFTEN gives wrong results!) I was so naive at the time that I didn't even realize WHY they want to do an amnio---so the woman can kill the child if a defect is detected. I was so naive, I thought they were doing the test so women could better prepare for life with a disabled child. I always assumed the best about doctors, not the worst. Now that I know WHY they insist on and push these tests, I definitely refuse them because I see them as being part of the "search and destroy" campaign against disabled unborn babies.
I would urge all pregnant women to AVOID these tests, and be forewarned that they especially target women over 35 and especially over 40 for these tests, and doctors can be VERY pushy if you are in that age group. Stick to your guns! Just say no! And because I have since met a number of women who miscarried after an amniocentesis (usually a late miscarriage, around 20 wks LMP, since an amnio is not usually done until at least 16 wks LMP), I would advise against that too. Don't risk your baby's life if you can avoid doing so.
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