Friday, October 16, 2009

No man's land

Elizabeth Aquino (left) is a Los Angeles writer and a fierce advocate for her daughter Sophie (right), who she writes about on her blog: A moon, worn as if it had been a shell. In this essay, she recalls the moment when she recognized that neurologists and science had no practical answers for treating her baby’s severe seizures. At the time, she lived in New York. The essay appeared in the Dec. 2008 online issue of Exceptional Parent Magazine. Thank you Elizabeth!
No man’s land
By Elizabeth Aquino

Fourteen years ago, when my daughter Sophie was diagnosed with a severe seizure disorder of unknown origin, I didn’t own a computer. When the doctor explained what was wrong with Sophie, I listened carefully but didn’t even take notes. I’m a smart, organized person and I trusted that she would tell me everything I needed to know.

“You shouldn’t really read anything about infantile spasms,” she advised. “It’s all very depressing.”

One day after leaving the hospital, I made my way to the Barnes and Noble on Broadway and 84th Street. It was a spectacularly new and huge bookstore and had already squeezed out the more intimate and beloved independent booksellers in my neighbourhood. But the immensity of the store, coupled with the bright lights and gleaming escalators, were reassuring. Surely I would find some answers in these slick stacks of newness.

I made my way to the children’s health section and promptly fell upon a book entitled “Seizures and Epilepsy in Childhood” by Dr. John Freeman. I flipped to the index and read “infantile spasms, page 108.” I turned to page 108 and crouched down on the gray carpeting to read.

“Only 10 to 20 percent of children with infantile spasms will have normal mental function; the vast majority will have moderate to severe mental retardation. This is the only (emphasis theirs) seizure type where one can predict such a poor outlook.”

I reread the lines, this time with my finger tracing the words. My lips moved, repeating the sentences over and over. A woman excused herself and reached around me for a book about colic. On the other side of the bookshelf, toddlers raced around their strollers and nannies, city babies at play. I swallowed and continued reading, the letters black and pulsating, a perverse seduction. This was knowledge.

About six months later, Sophie has already been on six drugs. Her seizures continue unabated and her development has plateaued. She’s nine-months-old and spends most of her day moaning. A new doctor assures us it’s plain irritability. A “side effect,” he says, “that you’ll have to figure out your tolerance for.” He recommends a new drug not yet approved by the FDA but available by fax through a pharmacy in London.

“Wow,” I think, “Europeans are always so much more sophisticated. We’ll try it.”

He writes us a prescription and gives us the fax number for the pharmacy in London. I imagine a small place on a cobble-stoned street, where the pharmacist still mixes drugs. I’m in Atlanta with Sophie, visiting my parents for the Christmas holidays.

The London pharmacy sends me the drug in individual foil packets. Each packet is a single dose, but for an adult. I have to gently shake the contents onto the counter and split it in half with a knife. It doesn’t seem so accurate, so I use a credit card, wielding it like the cocaine users I watched in college. The amount I give her could fit in a quarter teaspoon, fine white granules that appear smaller than sugar or salt. I lick my finger and place it in the powder and then gingerly on my tongue. It’s incredibly bitter so I spit it out. I have never been a drug user so am fascinated that such a minuscule amount can actually stop seizures. We add the drug to Sophie’s other two, a cocktail of the non-FDA-approved. And then we wait to see if it’ll work.

On the third night, Sophie doesn’t sleep. Screaming, she flails her hands and arches her back. She’s a wreck. It goes on all night for several nights. Sometimes, she quiets unexpectedly and collapses, exhausted, in her crib. I go downstairs and walk into the dimly lit living room where my mother sits, shadowed, in an armchair. She has insomnia. I kneel down next to her, lay my head in her lap and weep. She brushes the hair back from my face and says nothing.

When the wailing begins again, I climb the stairs and go to Sophie. I pick her up and walk with her, clutched to my chest but unable to cry anymore. I whisper into her ear and to the air around us, “Enough. This is enough. We will stop this.”

The next morning, I call the neurologist back in New York. I tell him that Sophie has been acting psychotic (if a baby can act psychotic). I tell him that her seizures have not shown any improvement, that she screams for most of the night, and that she appears very uncomfortable. The neurologist says little.

“Do you think that maybe the two drugs that are not FDA-approved are interacting with each other?” I say. “I mean, how many babies do you know on that particular combination?”

There’s silence. I picture the neurologist with his hand on his chin, stroking it like my third-grade math teacher Mrs. St. Andre did when she was thinking.

“Hmmm,” he says, “that’s a very interesting idea.”

For a second, I can’t breathe. His voice has travelled two thousand miles into my ear but his words are black blocks in a cartoon bubble in front of me.

I think, Shit. I have a good idea. I have a bachelor’s degree in English and French literature and he’s a neurologist, but I have a good idea. Shit. We are in no man’s land.
That moment I realized with stunning clarity that we were on our own in the care of our daughter and that no amount of scientific knowledge or experience would serve as comfort. In the space of a sentence, I felt I was shoulder to shoulder with the great minds of neurology. It felt like a crap shoot, and the only power I had was to stop.

I stopped that drug and began weaning it from Sophie’s body that day. I began to look and listen for alternatives and eventually found my way to an osteopath in southern California who worked primarily with brain-injured children. We would continue to work with neurologists over the years, open to new drugs and willing to try treatments, but I would never regain a sense of trust that the land we were traversing was known to anyone.

Today, when I get on my computer and 'google' any term I want, I am far from the frightened reader in the Barnes and Noble on Broadway. The words are plucked from some no man’s land and assemble themselves on the screen in front of me. For a while I pretend that I have a bit more knowledge than before and that it’s so accessible, right at my fingertips.


I know that no-man's land place. Thank you for this.

I have a long comment but I'll have to get back to it, Katie is sitting next to me, demanding my attention.

Even though I'm a nurse and know how little doctors know, it still surprised me that we never got a diagnosis or a reason for Katie's handicap. She just is. It's what the medical community prefer we not know, that what doctors know is far outweighed by what they don't know. It's also what we as a society would prefer to not know, we want to believe that somewhere there are answers but sometimes there are just no answers. Human beings are often mysteries.

Elizabeth Aquino is the best writer I know. I read her blog regularly. Thanks for re-publishing this essay. Someday, (soon, I expect), a reviewer's blurb on the cover of her yet-to-be-published book will use words like "searing honesty" and "this family could teach us all something about love."

Thanks for the comments, everyone! I so appreciate them.

Elizabeth Westmark -- You are so sweet. Thank you, especially. And I sure do wish I could read some of your writing. I miss you a lot.

Thank you for sharing this powerful and painful realization! I've been trying to post all day but blogger wouldn't let me post at work.

I am grateful to learn more about the experience of parenting a child with intractable seizures -- and humbled by it. I'm sure this will be an eye-opener for many BLOOM readers.

Like Elizabeth W. said, I'm eagerly anticipating your book!

Thanks again and cheers, Louise

I know no-man's land well.
I don't know if it is because of the time between our experience and yours, or if we are simply lucky to deal with doctors who believe in being very transparent, but from day one, doctors have been up-front with us about how little they know, so our expectations have been well-managed. But we have had those "holy shit" moments too, when we've made a suggestion to a top neurologist (or other specialty) and they have said "great idea, let's follow up on that" and it is both humbling and empowering at the same time.
Great article.