Sunday, December 8, 2013
By KJ DELL-ANTONIA
Louise Kinross is mad.
She's mad at the U.S. Department of Health and Human Services website. She's mad at the Centers for Disease Control and Prevention. She's mad at the American Food and Drug Association, the Well blog and the March of Dimes. She's even, I suspect, a little bit mad at me.
Why? Because -- inadvertently, through casual language, a less-sensitive focus and writing and campaigns narrowly focused on specific goals and prevention strategies -- Kinross argues that all of us have contributed to perpetuating a destructive myth: the mother who is to blame for her child's disability.
Kinross writes the Bloom blog on parenting kids with disabilities for the Holland Bloorview Kids Rehabilitation Hospital in Ontario. Her son, Ben, has a rare genetic condition. Recently, she followed a link here to Jane E. Brody's "Too Many Pills in Pregnancy" and read that "a growing number of pregnant women, naively assuming safety, self-medicate with over-the-counter drugs that were once sold only by prescription."
While many commonly taken medications are considered safe for unborn babies, the Food and Drug Administration estimates that 10 percent or more of birth defects result from medications taken during pregnancy. "We seem to have forgotten as a society that drugs pose risks," Dr. Allen A. Mitchell, professor of epidemiology and pediatrics at Boston University Schools of Public Health and Medicine, said in an interview. "Many over-the-counter drugs were grandfathered in with no studies of their possible effects during pregnancy."
In an article focused on the many sources of misinformation available to women attempting to research the safety of particular medications and the contradictory advice women receive from doctors, Dr. Mitchell's words are directed at institutions and professionals who have failed to give pregnant women the information they need.
Kinross hears those words differently. She hears, in essence, a count of "1-2-3-4-5-6-6-7-8-9-You." It's a count, and a blame game, that she hears both whether accusation is intentional or not. In her community, she says, mothers hear questions like "Didn't you test for that?" and "What went wrong?"
In her post "Why Blame Mom?" she argues that much of the language surrounding advice to pregnant women as well as warnings is "magical thinking" that suggests women who do everything right will have healthy babies -- and therefore, women who have babies with birth defects failed to do everything right.
"We have less control over a myriad of things that can happen to a fetus than books like 'Healthy Mom, Healthy Baby' -- or 'Five Ways to Have a Healthy Baby' tip sheets -- would have us believe," she writes, of work produced by the March of Dimes and the Department of Health and Human Services. She's not frustrated by efforts to help women have healthy babies, or to protect their pregnancies, but Kinross believes that both the media and medical professionals could better protect women whose children are born with birth defects from being blamed, and from blaming themselves, by remembering to emphasize how much we don't know about what causes most birth defects as well as how much we do.
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