Troubled by new medical ‘advancement’

• Reprints

Two of my four children were born in my “advanced maternal age” years; that is, over age 35. Though the babies I carried were at higher risk for several conditions, the one we hear about most being Down syndrome, I did not do any recommended prenatal testing besides a sonogram.

In the United States, studies routinely show that more than 90 percent of women choose to end pregnancies diagnosed with Down syndrome. But since my then-husband and I knew that we would not abort in any event, and the available invasive tests themselves, such as amniocentesis, carried a risk of ending the pregnancy, we said no thanks.

Down syndrome, which impacts cognitive and physical ability and appearance, results from a chromosomal abnormality, but it is hardly uncommon. One in every 691 babies is born with it, according to the National Down Syndrome Society. According to the organization, about 400,000 families in the United States have a child with Down syndrome, and about 6,000 babies with Down syndrome are born each year.

Well, perhaps ironically, the further into those AMA years I progressed, the less I worried about the babies I carried. With the first I had been frantic. I wouldn’t fill my gas tank myself for fear of the fumes affecting the little one. By baby No. 4, though I was more at risk for genetic abnormalities then ever, I didn’t worry about them much at all. I suppose partly because I had figured out by then that every child comes with some set of challenges.

Anyway, because of the risks involved with invasive genetic testing for Down syndrome, such tests are not routinely administered to women under the age of 35, when 80 percent of instances of Down syndrome actually occur. (As a result of the much higher fertility rates in that demographic.)

But a new test is a game-changer. A San Diego company, Sequenom, introduced for clinical use a simple blood test, MaterniT21, that is inexpensive, very accurate in diagnosing Down syndrome and cannot itself impact the pregnancy.

Some review: The vast majority of instances of Down syndrome occur in babies carried by women 35 and younger, but that age group has historically been less likely to get tested. Now a simple and accurate blood test for this condition can be safely and routinely administered to virtually anyone who wants it as long as a doctor authorizes it.

So for the math: If more than 90 percent of women who find out they are pregnant with a baby with Down syndrome abort, does this mean we might eventually have almost no babies born with Down syndrome? Will we have gotten rid of a supposedly “undesired” human condition by getting rid of the people themselves who carry it?

And what does that do to the rest of us? I am the first to admit that I’m not signed up on any “adopt a baby with Down syndrome” list. I also didn’t sign up on the “raising four children on my own” list. We never know what challenges life is going to present. Accordingly, what a false sense of security a “no Down syndrome” test result can give parents.

Sure, the new test is just a tool, after all. If used to prepare expectant parents for a baby with Down syndrome so they can learn about the condition before their little one enters the world, great. Maybe they can be assured that life expectancies and outcomes for children with Down syndrome are so much better now.

Early intervention for cognitive development and surgical and other treatments for physical impairments have fundamentally and positively changed the playing field for babies born with Down syndrome today.

But how many minds will change when they have this information? We live in a supposedly humane and tolerant age. I question that. Not when we apparently still have so little tolerance for humanity that might be a little different.

Scripps Howard