In the blur of the first weeks I was pregnant, my doctor told me to get an ultrasound. I complied and when my husband and I showed up for the test, I asked lots of questions about what we were there for.
The technician was very frank with me that we were there for genetic testing and that basically meant they were trying to detect Down syndrome. She said early genetic testing was for the sole purpose of giving us “enough time” to “make a decision” depending on the results.
The decision she was referring to is abortion, of course. My husband and I were kind of mortified that we’d found ourselves paying for an ultrasound in such a scenario. Our desire to see our baby overwhelmed our pocketbooks, but I was nervous about the possibility of getting news that our baby had problems. Pregnancy is hard enough without someone telling you about a problem you can do almost nothing about (save getting rid of the little one). By the way, I can’t speak for my husband but I was shocked at how well-developed a 14-week-old fetus is. I didn’t realize the fetus looked so much like a newborn during the first trimester (pictured below).
Anyway, I realized that I was in no way special and that such tests probably are given to tens of thousands of American women each day. I wondered why I hadn’t read about it before. I’d read a smattering of stories about genetic testing, but nothing that related that millions of women each year go through this.
The New York Times‘ Amy Harmon — who covers a lot of genetic testing issues — had a very interesting story this week that touches on this issue. She writes about how prenatal testing for Down syndrome is being received by parents:
DETROIT — Sarah Itoh, a self-described “almost-eleven-and-a-half,” betrayed no trace of nervousness as she told a roomful of genetic counselors and obstetricians about herself one recent afternoon.
She likes to read, she said. Math used to be hard, but it is getting easier. She plays clarinet in her school band. She is a junior girl scout and an aunt, and she likes to organize, so her room is very clean. Last year, she won three medals in the Special Olympics.
“I am so lucky I get to do so many things,” she concluded. “I just want you to know, even though I have Down syndrome, it is O.K.”
Sarah’s appearance at Henry Ford Hospital here is part of an unusual campaign being undertaken by parents of children with Down syndrome who worry about their future in the face of broader prenatal testing that could sharply reduce the number of those born with the genetic condition.
I wish editors would devote more resources to biotechnology reporters, because it’s clear this is an undercovered issue in mainstream media. Her take for this particular story is on that last paragraph — looking at parents of children who already have Down syndrome and how they are reacting to broader prenatal testing.
It turns out that the broad genetic testing only started this year — under a new recommendation from the American College of Obstetricians and Gynecologists. And 90 percent of women who are told their children have Down syndrome abort them. Parents of children with Down syndrome believe that number should and would drop if parents were given more balanced information about what life with Down means. Harmon says they’re engaged in one-on-one counseling and networking to reach out to parents. Here’s how she describes them:
The parent evangelists are driven by a deep-seated fear for their children’s well-being in a world where there are fewer people like them. But as prenatal tests become available for a range of other perceived genetic imperfections, they may also be heralding a broader cultural skirmish over where to draw the line between preventing disability and accepting human diversity.
What an interesting paragraph. I’m not quite sure what to make of it. The notion that these people would be called “parent evangelists” sounds very P.D. James-ish, no? What do you think of the evocative term? And if that paragraph isn’t full of ghosts, I don’t know what is. Reader Liz didn’t like the phrase:
Maybe these parents are just convinced that babies like their children deserve life? Why does such an effort deserve the (according to NYTimes sentiments) ugly word ‘evangelists’ when talking about why parents want to teach other expectant parents about Down syndrome children.
The rest of the article is interesting and describes the parents as motivated by anything but religion. They want more funding for research and greater acceptance of their children, she writes. Did Harmon speak only to parents who have these kind of bizarre motivations of wanting more children like theirs? What does that mean about who she spoke to? What about all the parents of children with Down syndrome who want to get the word out about what Down syndrome means simply because they believe that all children’s lives are precious? It’s kind of curious how they’re absent.
I appreciated the reporter’s technical understanding, which was nicely woven throughout the piece. She explains how doctors used to test for Down syndrome through amniocentesis tests for women who became pregnant after the age of 35. But with the early sonograms and two blood tests, doctors can pretty well gauge earlier on whether the babies have the extra chromosome that causes Down syndrome — what (as the reporter notes) columnist George F. Will calls a “search and destroy mission” for children such as his son Jon (who is a fantastic baseball fan and has season tickets to the Nationals near where I sit).
But I wondered if that accuracy couldn’t have been quantified a bit. I’m just curious since the women on my “Urban Moms” listserv have discussed the false positives of some early chromosomal abnormality tests. I think that’s an important part of the story. Harmon does discuss mothers’ high levels of dissatisfaction with how they are told of problems their children face. One of my friends from church — who is only 14 weeks along — told me this week that her doctors gave her the results and encouraged her to abort even after she told them this wasn’t an option. She was obviously upset by how they handled the situation.
Harmon’s story is so sensitive, sympathetic and well-written. For a technical story, it is remarkably human. I have so many additional questions I want answered about the topic — so I hope that she can look into more angles in future stories. For instance, it would be interesting to ask some tough questions of the medical community. They’re the ones who are pushing this test. Why? What is their motivation? And do insurance companies have anything to do with this? What’s their motivation? And what about a deeper look at how this testing affects pregnant women in general?
First image from Rob Kay at Wikipedia. The second is from the Michigan Department of Community Health.