The first test

Posted by jdg | Thursday, October 04, 2007

I was standing next to an ultrasound machine last week, watching the child squirm inside my wife's uterus, and I couldn't help but wonder what ancient people would have thought to see this machine and its technician at work. I once took a class on medicine and mortality in the ancient world, and I left no longer wondering why so many myths and legends arose from the experience of gestation and childbirth: Athena from the head of Zeus, Dionysus from his thigh, and Jesus from a virgin. Birth was always one of those ultimate mysteries. For thousands of years, it was enhanced by ceremony and prayer, a rich culture of folklore, old wives' sedimentary knowledge, and ultimately an unbinding sense of faith. I remember stories of pregnant women unbraiding their hair in the temple of Juno Lucina to prevent such symbolic entanglements from complicating a coming birth. Pliny believed placing the right foot of a hyena on a laboring mother was as effective as pitocin in hastening delivery, though the hyena's left foot would cause death. Tonics were made from goose semen, weasel urine, and sow's dung to ease pain. Suffering was inevitable; death, rampant. And yet the human race toiled on for years and years like this, men holding their palms together in prayer, women holding onto hope and faith that the little life inside them would turn out all right.

Last week the ultrasound technician was training a young resident on the machine. "Have you ever seen Svetlana do one?" she asked him casually. "Svetlana is a consummate professional," she said. They proceeded to argue over our baby's measurements and pointed adamantly at disputed shapes on the screen. Wood couldn't see the screen at all; it was turned away from her in what must be the cruelest aspect of this intervention, a roomful of people staring at a baby inside her that she herself could not see. Still, together we hung on every one of their technical words. We tried to determine implications from their intonations. These were our priests, our shamans. The machine, our oracle. In the end, we were left only with a snapshot of an in-uterine phallus and that birdlike heartbeat still in our ears.

A month or so earlier, still in the first trimester, we'd had another ultrasound that left us equally mystified. Later we learned that this screening had been scheduled just to determine whether our baby was likely to have Down Syndrome. "That's weird," Wood said to her OB. "I'm not even thirty. We didn't have that test during my first pregnancy."

"It's a new test," the OB assured her.

In the modern world, when you find yourself or your significant other pregnant, you often hand over a bit of your hope and much of your faith to some OB in clogs who takes your hand and stares at charts and declares that everything is okay, so long as that machine keeps beeping like that and you haven't eaten sushi or consumed the tiniest drop of alcohol and when the time comes you'll have a sip of that sow's dung tea or take a shot of goose semen in the spine and then hopefully everything will be okay, but even if it's not, everything will still be okay, thanks to the blessings of modern medicine. You trust your OB. You don't eat sushi or unpasteurized cheeses. You agree to undergo an unnecessary sonogram intended solely for genetic screening, so they can tell you if your kid isn't going to be "normal" when it's still at a developmental stage where it can be flushed out with Misoprostol. You do this as a matter of course, just because your OB tells you to. Then, weeks later, you sit in an examination room waiting for her to come tell you the results of that screening. You are angered by the very implication that you might destroy this life you've created, because you know part of you just might want to; but the fact that it is in there clinging to existence holds some immense power over you. You can't know yet but you are pretty sure that even if it turns out to have 21 chromosomes you will keep it, though you know there are plenty of people who've heard that news and 90-93 percent of them have decided otherwise. Who are you to judge them? You don't even know yet, and here you are judging them. You can't possibly judge them. You know the paper the OB holds when she walks into the room has your fate written all over it. Pottytraining until age seven or liberal arts college brochures at seventeen, which will it be? Your mother is a special education teacher. Your sister too. You know more than many what the life of a special needs kid's parent is like, though you haven't really got a clue, because you haven't lived it. You only know you have been raised to believe that there is value in every life, and you believe it still. And then the OB is ready to tell you your fate.

The other day I was talking about this screening to a friend who has an extremely-rare genetic condition that makes her about three-feet tall. I told her this test made me fear that one day the world might find itself free from people like her. That giving such choice to vulnerable expectant parents will mean those kids born to parents who chose not to destroy them because they had Down Syndrome will one day find themselves alienated in a world with few others like them. We talked about a world without anyone born with genetic flaws, only those who slip through the testing or can't be tested, the autistics and ADHDs and people brought into disability by the dangers of the outside world: paraplegics via polo accidents and teenagers with brains damaged by car wrecks. There will never be a world where everyone is normal, she said. There will always be people who are different. "Normal people benefit so much from having disabled people around," I said, thinking aloud. "Disabled people do so much to teach 'normal' people about empathy, and how to overcome actual suffering. So many disabled people somehow find a way to be so cool, and happy," I said, inserting my foot even deeper into my mouth, "Even when they have every justification to be miserable. It shames the rest of us to stop acting like selfish navelgazing dickheads all the time, and teaches us something about the nature of happiness."

"I'm glad we could be of service," she said.

"All I meant was that I resent this presumption that just because someone has a genetic abnormality, it means they don't have something important to bring to this world."

In the examination room, the OB coughed and told us that the odds were in lotto territory that the kid would have Down Syndrome. Still, I thought, someone wins the lotto almost every day.

I know life with a mentally-disabled child isn't some Cuba Gooding Jr. movie with a swelling orchestral score that marks the moment when the whole world learns the kid has a heart of gold and something special to teach us all. I know there are frustrations beyond imagination. But I also know that becoming a parent of any child takes a great leap of faith. I can't say it better that Kate, after she had confronted her own imagination, so I will borrow her words: "You may have a glorious labour and a robust baby only to have that same child become sick ten years later. Or, twenty years later, fall in with a bad crowd and become addicted to some vice and break your heart. To become a parent is to become unspeakably vulnerable, but there can’t be true joy, or discovery, or growth, without risk. Everyone knows this, senses it on some primal level — but mamas and dadas like us know it so much more vividly, having been struck by lightening."

So we "passed" this first test, but there are still so many ahead. The genetic screening couldn't pick up any of the other flaws and strengths we have grafted into this son. It couldn't determine the tragedy he will see during his lifetime. It didn't make me feel any less vulnerable.

I am still offended by how this initial genetic screening has become routine, by the ease it gives two vulnerable people to end a life they thought they wanted to become a part of theirs. In the ancient world, when babies with any genetic defects were born, they were left on the slopes of Mount Taygetos or tossed into the Tiber under the fourth table of Roman law. If they'd had the ultrasound technology to detect Down Syndrome in the first trimester, I have no doubt the Romans would have used it for eugenic purposes.

But those toga-wearing freaks drank weasel piss, too.

October is Down Syndrome Awareness Month. I only have one blog in my Bloglines written by a parent of a kid with Down Syndrome, but I would like to know of any others written by parents of special-needs kids. If you know of any good ones, please share in the comments to this post.