The week before I was scheduled to have my “nuchal” with my first pregnancy, Jane Brody wrote an article in the New York Times about how this non-invasive test for Down’s Syndrome was becoming more and more accurate and poised to replace amniocentesis in a few more years. This was 2006 and while all of my friends in New York City had had this relatively new test, it was not available to pregnant friends in other areas of the country or even those going for prenatal care in the nearby New Jersey suburbs. Apparently, if Republican Presidential Hopeful Rick Santorum had his way it wouldn’t be available to any of us—at least not with any kind of insurance coverage.
This weekend on CBS’s Face the Nation and in some of his campaign speeches, Santorum built on his anti-birth control momentum and went after health care reform for supporting insurance coverage of without a co-pay for prenatal testing. His argument: such tests encourage abortion. With this declaration Santorum took his single-track, anti-abortion thinking to a very dangerous level; in his world women would not be able to prevent pregnancy, terminate an unintended pregnancy, or even check on the health of their pregnancy just in case it might lead them to consider termination.
In fairness, Santorum doesn’t oppose all prenatal tests—I’m sure he’s fine with women drinking that horrible bottle of orange sugar-water to test for gestational diabetes because that just leads to a difficult diet not a difficult decision. He’s only worried about the ones, like the nuchal, that can reveal severe problems with the fetus.
Officially called the nuchal translucency, this test is done between 11 and 13 weeks and combines a high-quality sonogram with blood tests. During the sonogram, the technician measures the thickness of the fetal neck and the subsequent blood tests look at levels of pregnancy-associated plasma protein A (PAPP-A) and beta human chorionic gonadotropin (HCG). The results are not as exact as they are with an amnio, you don’t get a yes or no, rather they are given in the form of a probability. For my first pregnancy, for example, at age 34, I had a 1 in 500 chance of having a baby with Down’s Syndrome based solely on my age. The test determined that my actual chance was 1 in 4,450 (or so, I don’t quite remember). The test also revealed a minuscule chance of Trisomy 18 something like 1 in over 17,000. These results gave me a great deal of peace of mind and I chose not to have an amniocentesis which is more precise but also more invasive and carries a slight chance of a miscarriage.
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The second time was a little different; at 37 I was placed in the category of AMA (Advanced Maternal Age) and my chances of having a baby with Down’s Syndrome were 1 in 225 based solely on age. I had the nuchal—which like me had made its way into the suburbs in the four years between my pregnancies—and the numbers were good, not as good as they had been the first time but fine. The doctor who gave me the results suggested that I was in the clear and should go home and not worry. I went home but I worried, this time I needed more than probability, I needed to know. So at 18 weeks (a little late), I had an amniocentesis, which uses a big (very big) needle to take some amniotic fluid which is then tested for chromosome abnormalities (like Down’s Syndrome), neural tube defects (like spina bifida), and genetic disorders (like cystic fibrosis).
I have to admit that I am probably just the woman that Rick Santorum is trying to control. You can’t know exactly how you would react to any situation before you are in it, but I know I would strongly consider terminating a pregnancy if I found out that the child would have severe mental or physical disabilities. My decision would be based on an assessment of my resources in terms of time, money, and emotional resilience. It would be based on perceived quality of life of the child—while some disabilities like Down’s Syndrome do not prevent children from leading long and productive lives, other abnormalities that can be found by these tests are likely to result in a child who has a short (or worse long) and painful life full of medical procedures. I wouldn’t want to do this to a child. The second time around, I would have also had to base my decision on my then-four-year-old daughter whose life would be affected by the health of her sibling and not just in the immediate term—a disabled sibling who outlived me could become her responsibility.
Not all women or couples faced with bad test results make or would make the same choice. I have one friend who told me long before she got pregnant that she felt that she would make a good mother to a special needs child. She still got the nuchal, however, because she wanted to know in advance. Another friend got bad results after her nuchal—her chances went from 1 in 500 to 1 in under 100. She chose not to have an amnio, however, because she knew that she and her husband would be uncomfortable terminating the pregnancy so the risk of the test seemed unnecessary. However, as a result of that test, her pregnancy was labeled “high risk” and she was watched much more carefully until delivery.
I can’t imagine having to make such a decision but I find the possibility of not being able to get these tests and make my own decision far more terrifying.
Even Sarah Palin, who vehemently opposes abortion and has a son with Down’s Syndrome noted the value of these tests:
“I was grateful to have all those months to prepare. I can’t imagine the moms that are surprised at the end. I think they have it a lot harder.”
This is also a personal issue for Santorum. His youngest child has Trisomy 18, a genetic condition in which a person has an extra copy of material from chromosome 18 (Down’s Syndrome is caused by a third copy of chromosome 21). According to the National Institutes of Health, “half of infants with this condition do not survive beyond the first week of life. Some children have survived to the teenage years, but with serious medical and developmental problems.”
I feel for Santorum and his family as they will likely suffer the early death of this daughter. But I respect his and his wife’s decision to carry any pregnancy to term based on their belief system. What I can’t respect is his desire to impose that belief system on all women. And I find this even harder to respect after he has spent the last few weeks yelling about how the government is trying to impose its pro-contraception views on the Catholic Church. The hypocrisy seems so obvious.
Perhaps the biggest problem with Santorum’s views, however, is that like so many other things in this country they would inevitably be inequitably applied. Even if he becomes President, Santorum cannot impose his will on all women or ban prenatal testing entirely. He’s not even suggesting that. What he’s suggesting is that insurance companies should not cover these tests as part of primary pre-natal care.
So once again, women who can afford their own insurance or their own medical care can continue to get nuchals and amnios and make their own decisions. Of course, these are the same women who can afford birth control even if Santorum and his kind make the no-copay rule go away, and therefore, not get pregnant in the first place. And the same women who are in a better position to afford the medical procedures, physical therapy, occupational therapy, and special education that a special needs child would require.
But these are not the women who would be most affected by Santorum’s rule because try as he may (and I trust that he will keep trying) Santorum still cannot control the reproductive rights of women who can afford to “pay” for them.
No, once again, the attempts of Santorum and his far right brethren to impose their will on women can only be applied in such a way as to undoubtedly hurt poor women most of all.