Friday, September 7, 2012

Falling down the rabbit hole of 'why?'

Blame game. That’s what my friend Ijeoma called an important blog she wrote last week.

“The doctors couldn’t tell me why Deane has cerebral palsy. They could explain what happened – that his heart rate slowed down and didn’t get enough blood to his brain – but they couldn’t answer why. And that’s the question parents of disabled children cry at their darkest times.

“Often the only answer they can come up with is it must be their faults. If only they had done something different, if only they hadn’t done something, if only they were better people.”

This rang true for me. I remembered the hours after Ben’s birth when our midwife told me Ben had some unusual features and a pediatrician said it looked like a chromosome problem.

My mind was swirling, trying to make sense of what had happened. Did something go wrong during the birth? It was a student doctor who delivered him. What about the Prozac I was on when pregnant? I had a history of severe depression and before getting pregnant we decided I would stay on Prozac – after careful consultation with psychiatrists and the MotherRisk clinic at SickKids (studies showed there was no increased risk of birth defects in babies of mothers who took Prozac during pregnancy).

I felt a wave of terror, guilt and self-hatred. Had I done something to my baby?

Days later geneticists assured us that Ben’s genetic deletion was caused by a random error at or before conception – and had nothing to do with anything I had or hadn’t done. I went back to psychiatrists and the MotherRisk clinic to ask if there was any connection to Prozac. No they said.

Still, during Ben’s first couple of years I often found myself in a black hole driven by the question of “Why?” I think part of this sprang from my sense of guilt that I wasn’t able to give Ben a fresh start in life.

I know part of it came from the implication – by health professionals and others – that something I’d done during pregnancy was the culprit. I have filled out dozens – perhaps hundreds – of medical forms for Ben recounting my pregnancy history for people who should know that his genetic change happened at conception. I’ve even tried to explain why my pregnancy history is irrelevant and been told that they HAVE to collect the data anyway. One time I took Ben to a naturopath and after taking my pregnancy history she had the ignorance to say: “Well, you may not know for 20 years if it was the Prozac that caused it. But don’t beat yourself up about it.”

Even though geneticists told me that Ben’s deletion was a sporadic error it was hard to shake the feeling that the finger was pointing at me. No mother wants to hurt her baby!

My mind kept switching into overdrive, into detective mode, trying to come up with a predictable storyline as to why this had happened to our precious son.

At first it was related to something I’d done or D’Arcy had done. There was that time I was on antibiotics for bronchitis while pregnant. Was D’Arcy smoking at the time we conceived? I was in a fender bender when I was seven months pregnant.

None of these explanations made sense based on the scientific information we were given, but still I found myself falling down the proverbial rabbit hole, like Alice in Wonderland. “Down, down, down. Would the fall never come to an end! `I wonder how many miles I've fallen by this time?' she said aloud.”

Over the next few years, I gradually came to the understanding that nothing I had done physically had caused Ben’s genetic condition. I had contact with the University of Houston scientist Dan Wells, who had isolated one of the genes associated with Ben’s syndrome.

He said the most probable reason for the change was something called “unequal crossing over.” When D’Arcy’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 striped ribbon. But two inches were cut out in the middle and the ends reattached. Chromosome eight has about 150 million genetic letters and Ben 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.

Still, there remains a twinge of guilt – or the fear of guilt. Such that 18 years later, as I began writing this story, I sent Dan an e-mail, to ask if any new evidence had emerged to suggest cause.

"No, there's nothing you could do to reduce unequal crossing over,” he wrote back.

And what about the study last month that showed that paternal age is one of many factors that increase the risk of autism? Could age increase the risk of unequal crossing over in Ben’s syndrome?

There’s no evidence to suggest that, he said.

Of course D’Arcy wasn’t an older father at the time – he was 34.

Do you see how circuitous these ‘why’ searches become?

I can remember conversations D'Arcy and I had early on, where I would repeatedly recount what the MotherRisk clinic had told me about Prozac. "Three per cent of all babies are born with birth defects, and studies show that Prozac does not increase that risk."

"I told them if there was an increased risk, I wouldn't get pregnant!" I said.

"But all the doctors said the genetic syndrome has nothing to do with the Prozac!" D'Arcy said.

And around and around we went.

For many parents, the hunt for an answer doesn't end with eliminating physical things we did (or didn't do) that could have caused the disability.

When I finally recognized that my son’s syndrome was a chance error during conception I was still left with "why" – but on a larger level. And in some ways, that was a harder one to deal with.

If there’s a predictable reason for something, it gives you a sense of order in the world, a sense of control. Things don’t strike out of the blue. There’s a reason, a certainty – even a justice – about the way the world works.

But no matter how much I ruminated over it, I couldn’t come up with a reason that this random error had happened to us – good people both (I realize that sounds kind of silly, considering that random means there is no rhyme or reason!). My childhood religion held that our spiritual perfection could be manifested on earth through holding certain thoughts. Were my errant thoughts somehow responsible for my son’s disabilities?

Of course there are cultures that believe disabled children are the result of their mother’s sins.

But if there was any truth to that, why was my biological son born with disabilities and not my biological daughter? (I have two adopted children)

I’m a firm believer that life is full of joy and pain and that we learn and grow from all of our experiences. But I don’t believe in a spiteful higher power that apportions out specific losses and gifts to a person (and sometimes it's really hard to tell just what is a loss and what is a gift). So when a man at church one day said to me: “Perhaps God doesn’t want your son to speak. Did you ever consider that?” I had to say no, because that didn’t fit my conception of God. I wasn’t sure what did fit, but I knew it wasn’t that simple.

And then I had to question why it was that I was born with so many advantages in life? Why was I physically and genetically healthy and naturally able to excel at school? Why can I speak effortlessly? It wasn't because I "deserved" it, or did anything special. I was lucky.

A few years ago I read The Black Swan, a book that had a great impact on me. In it, Nassim Taleb argues that humans are wired to give predictable meanings to events AFTER they occur – to come up with simple stories to explain complex things that can’t be understood.

He argues that most of the really big events in history are rare, random and unpredictable. He calls them Black Swans – a reference to the 17th Century notion that “all swans are white.” In Europe, people had only seen white swans. As a result, the idea that swans came in one colour was held as a scientific truth. Until black swans were found in Australia in 1697.

We like to believe that past events will repeat themselves in a predictable, certain way, Taleb argues. If we know why something happened in the past, we can prevent it from happening in the future. We’re very good at looking back retrospectively and saying “that was really obvious” when it wasn’t at all.

“Our minds are wonderful explanation machines, capable of making sense out of almost anything, capable of mounting explanations for all manner of phenomena and generally incapable of accepting the idea of unpredictability,” he writes.

Yup, I thought, when I read that. That describes me perfectly. And in a way it's freeing to know that. The next time I find myself peering down that rabbit hole of "why?" I'll look the other way.


Such an important post -- I'm going to forward it on!

You are exactly right in that we try to assign meaning to events that have already occured. We are driven to ask 'Why?'

I've asked that question countless times - what environmental factors contribute to the two unrelated genetic quirks my kids have? The list of possible factors is endless, and I think of Rachel Carson's Silent Spring.

But ultimately there is nothing I can control or do differently; so, like you, I try not to look down that rabbit hole.

I just re-read this. Such bittersweet and familiar, circular musings. They get me too. Thank you for shining a light on these dark thoughts, Louise.

There is an article that I'd like to share which shows what lengths some parents will go to give what they think is an even playing field for their children.

Love this beautiful, too true post. I'm definitely going to feature it in my monthly round up of "What I Loved on OTHER People's Blogs" at the end of September (I'll let you know when it's up).

I loved this too. I do it. Fragile X is a mutation on one of my X's, so sometimes I wonder - could I have done something to make my body release the free and clear X, instead of the one with the mutation? Did I sneeze that day, and affect which egg got released? Totally ridiculous, but like you said, the human mind is capable of coming up with some amazing things!

Oh wow, Louise. I just read this and it rings so true. It's the overarching question in my mind at all times: Why? Was it deciding to vaccinate afterall after first thinking we wouldn't, it is my husband's health issues in his genetics? Why when we did everything to ensure optimal health, beyond what many parents do; it almost seems like a slap in the face or being laughed at for trying so hard; the rabbit hole metaphor is a great one and couldn't be more timely for me; thank you so much for sharing this with all of us

I'm glad you all got something from this. I think historically it's been the moms who are obsessing about 'why.' It made me concerned when I saw the study linking older dads as one of many factors in increased autism risk. I think prenatal testing has given people the faulty impression that disability can be prevented, and if it's not, it's somehow the fault of the parents. Many of us know parents of children with Down syndrome who have been asked point blank why they didn't abort their child. We seem to be headed towards a much narrower definition of what it means to have the "perfect" baby, and much less acceptance for kids who don't fit the norm.

ps -- I think we need to start from the premise that parents, as a rule, don't knowingly harm their children.