Historically it's been mothers who are blamed when children are born with disabilities. In earlier times we were thought to have sinned, while today the belief that women can prevent birth defects, by what we do or don't do during pregnancy, is rampant. And so is its unfortunate corollary: that women who give birth to a child with a disability caused it.
Public health messages that suggest mothers can prevent most defects by taking care of themselves during pregnancy abound.
According to the U.S Department of Health and Human Services website, a healthy baby is the outcome of these five steps:
Five Ways To Have A Healthy Pregnancy and Baby
1. See a doctor or other health-care provider from the start of your pregnancy.
2. Don't drink alcohol, smoke cigarettes or take drugs.
3. Eat healthy foods, including fruits, vegetables, low-fat milk, eggs, cheese and grains.
4. Take good care of your health and exercise sensibly.
5. Have your baby checked by a doctor or health-care provider right after birth and throughout childhood.
More current information (including the importance of folic acid and risks associated with obesity and diabetes) is listed at the Centers for Disease Prevention and Control.
Yet we know from the March of Dimes that the cause of most birth defects—up to 70 per cent—is unknown. It follows that in most cases a woman can't control whether her baby is born with or without a disability (unless she aborts a child diagnosed prenatally). I bet you most mothers of children with disabilities followed the five tips above to the letter.
So why are we led to believe our baby's health rests solely in our hands?
Consider this Healthy Babies Are Worth The Wait t-shirt I found as part of the Prematurity Campaign on the March of Dimes website.
What is the meaning of this, I thought? Women don't choose to have premature babies because they're impatient. Most preterm labour, in fact, can't be prevented. "Our analysis shows that the current potential for preterm birth prevention is shockingly small," said Dr. Joy Lawn of Save the Children, who led the first multi-country study looking at the causes of premature births and how to reduce them, published in The Lancet last November. So why suggest that women can control premature births?
Apparently the Healthy Babies Are Worth The Wait initiative targets women who consider scheduling a C-section before 39 weeks. "If possible, it's best to stay pregnant for at least 39 weeks," says the article.
This campaign won't touch the rate of premature births, which declined in only three countries of 65 from 1990 to 2010 according to The Lancet study. That's because asking your obstetrician for an early C-section isn't a major contributing factor.
But how will a mom of a preemie with disabilities feel when she reads that t-shirt message? What if a sibling of the child with disability reads the shirt and asks Mom why she didn't wait?
Yesterday I read about a new March of Dimes book called Healthy Mom, Healthy Baby in this New York Times' article: Too Many Pills in Pregnancy.
According to the Amazon description, Healthy Mom, Healthy Baby empowers "mothers-to-be... with more information and positive steps than have ever been available before to ensure both a healthy pregnancy and a healthy, happy newborn."
If most causes of birth defects are unknown, "positive steps" taken in pregnancy can't guarantee a healthy baby.
The book is mentioned in an article in which the American Food and Drug Association estimates that at least 10 percent of birth defects result from medications taken during pregnancy. According to the article, a recent study shows inaccuracies in online information about which drugs are safe, which means women who choose the Internet over a doctor's consult may receive faulty advice.
That's critical information for women, and I can't imagine anyone arguing that we shouldn't carefully weigh the risks and benefits of medication use with informed doctors.
But don't suggest that healthy moms who do all the right things during pregnancy have healthy babies!
Titles like Healthy Mom, Healthy Baby feed this magical thinking. And they reinforce the popular fallacy that mothers of disabled children did something wrong to cause their child's condition.
In a recent piece called Pregnancy and blame on Conversations, an Australian news site, author Kathryn Knight writes about how simplistic public health messages about birth-defect prevention diffuse into the culture. We all know parents who've been been the recipient—at school or on the playground—of judgemental questions like: What went wrong? Didn't you get the test? Why didn't you terminate?
And that line of questioning isn't limited to an uninformed public.
I have a son with a rare genetic condition. The way a researcher described it, when my chromosome 8—let's call it a green ribbon—exchanged parts with my husband's chromosome 8, a red ribbon, to produce a striped red-and-green ribbon, a minute piece was left out. That random error at conception caused his disabilities.
Yet to this day (he's 18) I'm asked by health providers for a detailed pregnancy and delivery history. "But the genetic condition occurred at conception," I will implore, as the 20 questions about my pregnancy are trotted out. "It had ALREADY happened!"
A blog in Three To Be's Parent Advocacy Link yesterday had a similar theme:
"When Maclain was born, I blamed myself very heavily for a long time," writes Brenda Ferland Agnew. "It was my fault that one of my twins had died. I should have known sooner that something was wrong. I should have gotten to the hospital sooner. If I had done things differently both of my babies would have survived, and Maclain wouldn’t have been born so early. I could have prevented his brain damage if I had done something more. I carried this with me everywhere I went, with every move I made. It ate away at me, and kept me awake at night...
"A year and a half after his birth, we received confirmation that Maclain’s brain damage was caused by a condition known as Kernicterus. He was not treated for jaundice, and this was what caused his cerebral palsy and his hearing loss. We had suspected it for a few months, and after a visit to our neurologist, we got a letter that ruled out his brain damage having been a result of any intrauterine insults, or because of the Twin to Twin Transfusion...
"I was so angry that I had been made to feel by all the medical professionals, that my son had disabilites because of something I had done wrong."
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.
Let's speak the truth about how much we don't know about the causes of childhood disability and, more importantly, how to prevent it. Let's tell the truth about how Healthy Mom can just as easily produce Unhealthy Baby, or Healthy Baby with a Disability (because disability is not necessarily synonymous with poor health!).