Sunday, September 7, 2008

Prenatal Testing and Down syndrome

I have some prejudice against prenatal testing, dating back to the year 2000, when I was pregnant with my first. I was 34 years old at the time, but since my baby was due to be born shortly after my 35th birthday, I was offered a blood test to screen for abnormalities. Since it was non-invasive, carrying no risk to the baby, I submitted to it. Well, it came back abnormal, or positive, indicating a 1 in 87 chance of the baby having Down syndrome. We were offered an amnio, which we declined, and then were offered a level 2 ultrasound with a specialist. At that appointment we were told that our baby had died. I was just shy of 21 weeks, and had felt no movement, but wasn't overly concerned since it was my first pregnancy. I wasn't showing, which also didn't concern me much at the time.

I had seen the baby doing flips and sucking his thumb at a seventeen-week ultrasound, so this was incredibly shocking news. I didn't understand why I hadn't had a miscarriage or any bleeding. At that time, I had never heard of a missed miscarriage, in which the pregnancy stays in tack, despite fetal death.

We wondered if the baby could have had Down syndrome, because normally very late miscarriages are the result of a problem with the mother, not the baby. But I was fine. The geneticist at the specialist's office, who came to talk with us after we were given the news, said that most Down syndrome babies don't make it to their birthday, due to heart-related defects, and other problems. She thought Down syndrome could have been the problem, or perhaps a cord accident. At any rate, we knew one thing. God wanted that baby.

The pathologist at the hospital said the baby looked perfectly normal; there was no outward sign of Down syndrome. We didn't order an autopsy or anything, since it would have been very expensive, wouldn't have been covered by insurance, and wouldn't have helped with the grief in any way.

After the ordeal, and during the early grief process, I read an article (from a conservative source - not from the health care industry) about the blood test I was offered. I was horrified to learn that it was supported and paid for by the State of California, in part, so taxpayer money spent on various forms of assistance for Down syndrome children, could be saved. This of course, is what secular, pro-choice society deems as "progress". Forgive me for the sarcasm. Most couples given the diagnoses of Down syndrome choose to abort their babies. The current rate is about 90%. Nowadays, all moms are offered and encouraged to get this test - not just moms thirty-five or older. That's so they can attempt to catch all the Down syndrome pregnancies, in the interest of choice and progress.

I got pregnant again, with Daniel, five months after we buried our first-born son. I declined the blood test in that and every subsequent pregnancy, out of my own sense of principal. I don't tell the doctors or nurses why, I just simply say no. They look at me like I'm ignorant, and that bothers me some, but whatever. I'm braver now that I'm older, thank goodness.

I know that many people use testing not so they can plan an abortion if the news is bad, but because they want to be prepared. That is fine. But I still hate that people are running scared, doing something they might not feel is right deep down, because little if any positive information is given about Down syndrome children; abortion is most likely the first option given. Abortion is so accepted. That in itself makes it easier for people to go against their conscience, since majority opinion can often seem like real truth.

Most Down syndrome children are born to young couples, because these couples are having most of the nation's children. It happens to a larger percentage of older moms, though. I might be carrying one now - I don't know. Don's mom's first baby was Down syndrome, and sadly, died of pneumonia at 8 months old. His mother was in her late twenties when she gave birth to this baby, Don's first sister. As far as I know, there are no pictures or anything, of Diana. Don's mom died in a car accident when he was 16, and the dad is mostly non-communicative about this, so Don and his living sister don't know very much.

The risk doesn't bother me, even given that there's this one incidence of family history. Not because I'm particularly brave about such things, but because God designed menopause to occur near age fifty, not near age forty, for one thing. He designed our ovaries, our eggs, and he allows the degeneration of those eggs, and the abnormalities. If he didn't want some chromosomally-abnormal children on this earth, he would have designed us differently. This logic may not make sense to anyone but me, but that's okay. I really, really trust God. He knows what we need. Who am I to say he made a mistake, when he designed us? He doesn't make mistakes. Period. And if we, as a society, keep trying this hard to make life "easier", we will find, down the road, that our lives are devoid of meaning. God didn't design life to be meaningless. I fear we are messing things up, badly.

And, no, I'm not against medical intervention in general. I'm just against intervention that takes life. Much of progress is good. Much of it is from pure, or at least sound, motive. But this? No.

Maybe someone given a prenatal diagnoses of Down syndrome will find this blog during an Internet search. I hope so. God can make that happen. I want scared parents to see this link below, which I found on Barbara's blog. Barbara, you might recall, is the mother of four Down syndrome children who wrote that article I pasted about Sarah Palin. On her blog sidebar at the left, you'll also find a link containing archives of Down syndrome information.

Down Syndrome


Fern said...

WOW. I can't believe those tests are funded to try to weed out the babies with problems, especially DS. And I'm also dumbfounded that most people really would choose to abort a baby with DS. My friends are pretty liberal, but whenever we've discussed prenatal testing we've generally agreed that we decline it because we wouldn't do anything with the info anyway.

For Jason and me, we passed on the prenatal testing because the test isn't fool-proof. We thought, if we get a positive result, we will be stressed for the rest of the pregnancy, and we'll also be hoping the test was wrong, leaving us open to being disappointed/heartbroken again after delivery if the test was right. But I've seen other bloggers who used the time to prepare, and then were pretty much fine with the official DS diagnosis once their child was born.

You have probably seen this blog, but it fits perfectly with what you're writing about here so I'll link it. This family was told that their baby was 100% going to die. They carried the pregnancy to term just because that was their moral calling, and then were shocked to discover that the baby was more or less okay. They hadn't prepared a nursery or anything, and had to rush to get everything ready because he was coming home! The doctors were completely wrong about what he had. Now, he does have some health issues but nothing like what they'd expected. Look at him -- he's 6 months old now and cute as a button and doing the things babies do... and he is a perfect example of why prenatal testing is scary to me. Not that it's bad, but it can be so misleading.

Evenspor said...

I think your logic is perfect. I agree that God has a reason for sending us downs babies and other babies with abnormalities. I too am shocked at how many abort babies just because of that. That is really, really sad.