I read a lot about prenatal testing, especially now that a company called Sequenom has developed a test that purportedly can definitively (well, with 99% accuracy) detect Down syndrome via a maternal blood sample as early as 10 weeks. Usually in the “mainstream” media, I read articles that herald advances in prenatal testing as a way to “prevent” children with disabilities from being born. ABC News reported the test as a way to avoid amniocentesis, and therefore as a way to “Cut Healthy Baby Deaths.” A New York Times article–”Sequenom’s Test for Down Syndrome Raises Hopes and Questions” offered some nuance, but it still presented the information in a purely clinical manner, whereas one of the problems with prenatal testing is that Down syndrome occurs in the context of a human being and a family. A list of statistics can never contain the reality of an individual’s limitations and possibilities.
Then on the more conservative side, I read a lot about how babies with Down syndrome are aborted 90% of the time. It’s not true. (I’ve written at length about this misperception: 90% of Babies with Down Syndrome Aborted? Really?) The real number is closer to 50%, still unbearably high, in my opinion, but also a lot lower than 90%.
All this is a long way of getting to my point, which is that Bonnie Rochman’s article in this week’s TIME magazine, Early Decision, is the best article I’ve ever read about prenatal testing and Down syndrome. Yes, I’m totally biased. Rochman interviewed me for the article, she quotes from A Good and Perfect Gift in the article, and it includes a photo of our family. But I still think it’s the best.
Rochman addresses both sides. She offers a clear explanation of prenatal tests, the abortion rate related to those tests, and the reasons why some women choose to abort a child with Down syndrome. She also challenges the prevailing negative assumptions about Down syndrome:
professor Jacob Canick hailed the results (of a study of the recent Sequenom test) as a ‘major step for prenatal diagnosis’. ” Whether or not you agree hinges largely on how you’d feel about raising a child with Down syndrome.
She goes on to offer a list of positive information and experiences of raising children with Down syndrome:
That job is less frustrating than it’s ever been. While half of all babies born with Down syndrome have congenital heart defects, new surgical techniques have made repair relatively routine, extending their average life span from just 25 in 1983 to 60. Thanks to early educational intervention, more and more affected kids are attending mainstream schools. Teens with Down syndrome go to college; 20-somethings get married. “Now is the time to have kids with Down syndrome,” says Amy Julia Becker, author of A Good and Perfect Gift, about life with her daughter Penny, 6, who has Down syndrome. “It is ironic that [earlier screening] is happening at a time when it’s easier to have Down syndrome than ever before.”
Rochman offers a subtle challenge to some of the premises behind prenatal screening:
putting aside the existential debate over abortion, what does it mean for a society to weed out children with Down syndrome or any of the other less than perfect among us?
On the whole, Rochman doesn’t engage in a debate. Rather, her article offers accurate information about prenatal testing in the context a positive portrait of life with Down syndrome, and this portrayal in and of itself challenges the assumption that a life with Down syndrome is not a life worth living. She interviews another mother, Melanie McLaughlin, about her decision to have her daughter Grace, and she offers a portrait of life as an adult with Down syndrome through the eyes of John Anton. The caption of the photo of Anton reads, “A life in full Anton is typical of adults with Down syndrome. He works late at home, after a day on the job in the Massachusetts statehouse.” Finally, after a description of Penny, she includes one of my favorite quotations from A Good and Perfect Gift:
Can she live a full life without ever solving a quadratic equation? Without reading Dostoyesvsky? I’m pretty sure she can. Can I live a full life without learning to cherish and welcome those in this world who are different from me? I’m pretty sure I can’t.
I first wrote those words in my journal nearly six years ago. I’m all the more sure now that Penny’s life is and can be just as full as mine, and that mine is far more rich and whole than it would ever be without her presence in it. Thank you, Bonnie Rochman and Time magazine, for a beautiful and honest portrayal of life with Down syndrome.
*** If you liked the Time magazine article about prenatal testing and Down syndrome as much as I did, write a letter to the editor: http://www.time.com/time/letters/email_letter.html
***You can see the article in full on Reed Young’s (the photographer’s) blog