Sunday, May 31, 2015

The blame game

By Louise Kinross

This morning I woke up with a sense of dread. My chest felt like an aching black bruise.

I'd read this piece in The New York Times Magazine about pregnant women and anti-depressants last night. 

Somewhere between my reading and the hours I'd spent asleep a thought had taken root in my mind: Maybe I caused my son's genetic condition. And now I was gripped with terror.

I had to get up and reread this piece I wrote a few years ago, about how parents tend to fall down a rabbit hole of "why" when their child is born with a disability. And how we're determined to find a storyline, or cause and effect, that starts with something we as parents did wrong, even if it doesn't make sense.

I had to remind myself that my son's genetic condition happened at conception, not because I was on a low dose of Prozac while pregnant (to keep severe, recurrent depression at bay).

Thankfully, over the years I'd had contact with Dan Wells, a University of Houston scientist who'd isolated one of the genes affected in Ben's syndrome, and he'd explained how the random deletion occurred. 

The most likely reason was something called "unequal crossing over." When my husband's chromosome eight exchanged parts with my chromosome eight, to ensure more genetic diversity, a tiny piece was left out. He likened it to a green ribbon and a yellow ribbon binding together to become a 150-inch green and yellow ribbon. But two inches were cut out in the middle and the ends reattached. Chromosome eight has about 150 million genetic letters and my son's is missing about two million. "There are some places in the genome where you could cut out two million letters and it would have an almost unnoticeable effect," he told me.

The cause of my son's genetic condition, Dan said, was random and couldn't be linked to an identifiable cause. And then I read a study showing that the error was more likely to occur in the sperm than the egg, anyway.

"There's nothing you could do to reduce unequal crossing over," Dan said. 

So how is it that 21 years later I could be hit with such a massive sense of guilt? 

We know from the March of Dimes that the cause of up to 70 per cent of birth defects is unknown. It follows that in most cases a woman can't control whether her baby is born with a disability. But this isn't a storyline we're comfortable with as a culture.

This paragraph from Andrew Solomon's New York Time piece resonated: "We have defined pregnancy as a universal Lent in which a thousand talismanic things must be forsaken for the health of the developing child. The conventional wisdom in the United States is that women should not sip half a glass of wine during pregnancy, or do the wrong exercise or take prescription medication of any kind. Some women find these relinquishments reassuring; they support an illusion that the mother's behaviour can guarantee a healthy baby."

And the corollary is that if your child is born with a disability, you did something wrong. 


I am sorry, Louise. It's all just so hard, isn't it. And the hard, if it goes away, inevitably returns for a visit. I guess we have to tolerate the visitor but just not listen, push them out the door, etc.

That was a very disturbing article that Solomon wrote -- and I don't have any answers. The more I'm "in" this world of disability, the more I realize how acceptance, ever elusive or sometimes elusive, is the only way for me to "live."

Ah, this is a very thought-provoking piece, Louise. I'm distraught that a piece by Andrew Solomon can cause this kind of pain.

Just to add another layer of complexity - some of us CAN control if our children are born with a disability - and that's through prenatal testing for things like Down syndrome and Spina Bifida. And what of families who chose not to control that, either by turning down testing, or continuing with their pregnancies?

I agree with Elizabeth - accepting difference as part of the natural human fabric is the way to go. There's no such thing as a 'perfect' child, even in typically-developing fact, the whole idea of 'perfect' does not exist.

I've obviously got no answers, just more questions. Appreciate the chance to think more about this...

Thanks Elizabeth. In general I thought Andrew's piece was fine. Perhaps it just goes to show how sensitive parents are that the slightest suggestion that they may have done something wrong sends them over the edge!

I hope our readers will check out your beautiful piece on the On Being public radio website

Hi Sue -- Thanks so much for your message. I guess when writing the piece I was thinking of "control" to mean that by doing specific behaviours to take care of yourself, you can create a "healthy" child. If you only do "A, B and C" then your child will be healthy, many of the public awareness campaigns say.

I think in our culture that abortion (when a fetus is diagnosed with a disability) often doesn't feel like a "choice" to the parents involved. There is such a rush to judgment. I guess you're right, that from a medical perspective, abortion is one way of "controlling" disability. Have you read The Upside of Stress, which is a book I wrote about the other day? I love it because it's about how stress is linked to meaning in life, and that the absence of stress doesn't make a good life (but in our culture, if you feel anxious, you immediately question what is wrong with my life?). And that, in fact, stress can make our lives richer. It's an interesting perspective.