Chapter 2: Asking Why

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Asking Why

 

It is natural – and essential – to wonder why children are born with things like spina bifida.  There are two ways to ask the question.  When I first asked, “Why did this happen?” it was a question for science.  I initially turned to medical researchers and epidemiologists for answers.

Wondering why this was to be Blaine’s particular destiny, his karma, came later.

At first I just wanted to know why it happened at a cellular level.  What biological message directed the spine to stop growing.  What particular mechanism had gone awry.

I soon learned that researchers had decided that neural tube defects like spina bifida are partly genetic, because there is a higher incidence within families.  I discovered that once a mother has a child with spina bifida, her future children are more likely to have it as well.

But researchers had also observed a very puzzling geographic pattern.  Spina bifida occurs at much higher rates in some parts of the world, and at distinctly lower rates in others.

Some epidemiologists noticed that births of children with neural tube defects are not evenly spread through time.  Clusters of births – in both space and time – are frequently recorded.

I felt a certain irony when I discovered that my child had been born with something with such a fascinating geography.

My college and graduate degrees had been in geography, and while I was pregnant, I had been teaching geography at Portland State University.  Looking at how things are distributed through space has always fascinated me.  I think it is responsible for the “outside looking in” view I tend to adopt, and is even why I frequently try to imagine seeing the earth through the eyes of an alien.  One of my earliest memories is gazing awestruck at the deep and vast night sky that appeared through slices in the fir trees of southern Oregon, thinking how small and remote are both a child and her planet in a space that reaches so far.  As a 10-year-old living at the edge of the woods along the South Umpqua River, I had surveyed, and then mapped on butcher paper, the 200 or so acres that surrounded our house.

Through college, and especially while in graduate school, I had become accustomed to questionable looks and derisive comments when I revealed the subject of my major.  “There’s a Ph.D. in geography!” more than one person marveled, “I mean, after you learn all the states and capitals, what else is there to do?”  I tried, but didn’t always succeed, in using a lighthearted tone when I replied that we move on to memorizing county seats.

In college, while living in an inner city neighborhood in what was the second most populous metropolitan area in the country, I studied urban geography.  I returned to Oregon for graduate school, and immersed myself in cultural geography, studying how culture is spread through time and space, specializing in the geography of China.  I wanted to learn about a culture that was as different as could be from my own.  I selected China because at the time it was the only major region of the world where one could not purchase Coca-cola.

During and after leaving graduate school, I examined how and why humans have changed the landscapes we have inhabited.  I looked at vegetation patterns in Oregon, and had done a year-long study of trees immigrants had introduced into Oregon.  For several years I taught a very popular course on the geography of Portland.  In fact, I had begun writing a book about Portland’s environment, explaining how the natural world had been changed by the people who have lived here.

But the truth was, I had my own nagging doubts about devoting one’s life to studying geography.  I found myself wondering, “In the scheme of things, how much does this really matter?”  Although I could justify my intellectual curiosity in the subject, my life’s work needed a better reason for being.

While I was pregnant, I was invited to participate in a study that was trying to figure out why the rates of certain kinds of cancer were higher in some parts of Portland than others.  If we could solve this geographic puzzle, we might be able to figure out the cause of the disease, and eliminate it.  This is one way a geographer could save lives, I thought.  It meant I could keep doing geography, because it mattered after all.

And then my son was born with a hole in his back, and nobody knew why.  Even while I struggled to realize what had happened, and begin to understand it, I started asking questions.  Within a few days, I knew I had happened upon a startling geographic enigma.

One study found astonishingly high rates in southern Wales, and in Northern Ireland.  In the United States, proportionally more children are born with spina bifida on the east coast than the west.

For a time, people thought it might be caused by a fungus that grows on potatoes.  One researcher questioned a possible link with vegetables in the brassica family – including broccoli, cabbage, Brussels sprouts – that contain goitrin.  My heart skipped several beats when I read that, because I remembered that shortly before I became pregnant, I had begun to get violently ill every time I ate broccoli, a vegetable that up until then had been my favorite.

When a large percentage of children with spina bifida were born to workers in tire factories in England, researchers questioned whether it was caused by a chemical added during the manufacturing process.

Several scientists had attempted to explore the causes of spina bifida.  When I read the studies, they seemed incomplete.  Either they had too little data, or the data was unreliable.  There were too many variables, and no way to isolate them.  The studies were retrospective, and since nobody knew exactly when exactly what went wrong, no one really knew what questions to ask and when to ask them.  It seemed to me all the researchers had given up too quickly.  Solving this riddle would require a massive amount of very carefully selected data.  It would be an enormous undertaking.  It could take a lifetime.

Clearly, I was the one to undertake this task.  I would combine the skills and training of a geographer, with the commitment and determination of a mother.  I understood that this was to be my destiny, my life’s work.  I did not shrink from my task, this was to be a crusade.

With Blaine snuggled in his pack, I made several trips to the Medical School Library at Oregon Health Sciences University.  I looked over the card catalog and medical indexes, and tracked down every relevant article I could find in the stacks.  I had to use a medical dictionary to understand some of them

First I needed to understand to what extent spina bifida was genetic, and to what extent it was not.  It couldn’t be entirely genetic, I reasoned, because there are such striking differences in the incidence of births over time.  The rate varies over decades, and is even higher during certain seasons of the year.  If it were merely genetic, wouldn’t the rate be constant?

Blaine was but three months old when I made an appointment to meet with the man who several had identified as Portland’s leading neonatal geneticist.  I spent hours developing a long list of questions to put to him, and hoped to convince him to help me undertake an investigation.

Finally, the day arrived I was to meet with Dr. Gerald Prescott at Oregon Health Science University’s spina bifida clinic.  Blaine was snuggled in his usual position in the baby carrier tied to my chest when we took an early bus downtown.  It was a partly overcast but pleasant autumn day, and we made the most of it, strolling along the sidewalks of the transit mall and surrounding blocks.  We sat for a while on a bench under the majestic elm trees that surround Portland’s downtown library, smiling at dozens of others who were also out enjoying the day.

I was rather amused, knowing that the people who smiled back at us were seeing us as typical mother and her child.  They couldn’t tell that Blaine was paralyzed.  And they didn’t begin to suspect they were looking at the mother who, because of the son who clung to her bosom, was at that moment preparing to take the first step along a path that would lead to a major medical breakthrough.

Soon both Blaine and I began to feel the ravenous hunger that can suddenly strike an infant and nursing mother, so we stepped into the Chinese restaurant across the street for a bite to eat.  Blaine settled in for his midday meal, and I ordered fried rice.  As I sipped tea, I reviewed the list of questions I had prepared for the geneticist.  I was especially curious about how much genetic information had been collected about families who had a child with spina bifida.  I wondered why no one had asked to look at my genes since Blaine was born.

The waitress delivered the fried rice, and I continued scrutinizing my notes as I began to eat.  I daydreamed about how a research study might be designed that would find the missing link, the key to this mysterious and elusive puzzle.

There has to be an answer, I vowed.  I reminded myself that we may not know what causes spina bifida only because no geographer has taken on the problem.  I looked down and saw that Blaine had fallen asleep at my breast.

Maybe what’s important is not where the child was born, I thought.  I cracked open the fortune cookie, and began to nibble on the crunchy shell.  Maybe we need to look at the place conception occurred.  Maybe it was something momentarily present in the environment when the sperm and egg united.  Or maybe it has to do with where the mothers spent their early lives, when their reproductive organs were forming.

Or maybe it’s not the mother at all.  I fingered the tiny slip of paper I had pulled from inside the cookie.  Maybe it’s something to do with the father’s background.

I glanced at my watch and noticed it was nearing time to catch the next bus up Marquam Hill to the clinic.  If the geneticist can help me understand what part of this puzzle is genetic, I thought, then I can discover what geographic factors might be involved.  First, I’ll have to figure out what data to collect.  And where I can collect it.  I straightened out the fortune and looked at the message printed on it.

Suddenly I felt as if I had received an electric shock, strong enough to lift my every hair from my skin.  Blaine awoke with a start.  I closed my eyes, shook my head, and looked at the fortune again.  Something slowly crawled all the way up my spine.

I looked down at Blaine and said the words aloud to him.  “Man can cure disease,” I read, “but not fate.”

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About mariadeathstar

This is where I express myself. The real me. Prolly not for the faint hearted. I'm also real on twitter: @mariadeathstar

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