playing god

The genetic counselor rang my cellphone while I was at work this afternoon. I asked her to hold a moment while I scurried for a paper and pen and ducked into the nearest conference room and shut the door. "So, what's the news?" I asked breathlessly.

"Good news! -your blood work came in really strong," she declared.

I felt the air go out of me in a giant rush and I jotted the numbers on the page: 1 in 710 for Down Syndrome. 1 in 10,000 for Trisomy 18.

During our initial prenatal appointment at OHSU, we initiated the agonizing genetic testing process. You can hardly blame me for omitting the ugly details from previous posts, since contemplating the potential one's fetus has of being damaged is little but a massive killjoy -and I want nothing more than to be joyful. I didn't even want to talk about it with M -what is the sense in considering what-ifs? I just kept to myself and waited for the call.

Our hope was to avoid the more invasive sorts of tests like amniocentesis (which carries it's own attendant risks) and so we chose instead to undergo a vague first trimester screen called the "sequential screen." The screen involves a bizarre calculation based on the combination of the measurement of the clear space on the back of the baby's neck (called the Nuchal Translucency measurement), the maternal age, the size of the fetus, crown to rump, and a bunch of crazy blood work. I think of it as akin to the way credit agencies calculate one's credit score -secretive and possibly totally bogus. But it was better than a needle through the belly.

The trouble with the sequential screen is that you don't get any certainty at the end of the day -only rough odds. 1 in 300 or worse is considered "high risk." And I didn't start out on the best footing. After the thrill of watching the baby squirm on the video screen, we were left alone in the darkness with our happiness for a few sweet moments until a mad-scientist-like character barged in, introduced himself and told us that our baby had an "above average NT measurement" (2.4mm instead of the "normal" 2.1mm -missed the mark by .3mm?!). He highly recommended we undergo a fetal echo-cardiogram and other extensive testing. We went home jittery and anxious and I spent the following days hunkered down with google-search to read horror stories. Never a good idea.

I was just praying for something on the other end of 1 in 300. If I could manage to squeak out better than a .5% chance, I think I could live with that without suffering paralyzing anxiety for the rest of the pregnancy. But if the number came in just on the cusp, I was anticipating having to make decisions that I would rather avoid -the decision to allow an invasion of my uterus which would put my baby at risk of a miscarriage (after the misery of the first trimester, I couldn't imagine doing it all again someday! -or what if the baby dies and all the tests come in negative?). Or worse, if the child were found to be disabled in the extreme, would I decide to keep it? I didn't think so, but I also couldn't bear the thought of terminating this late in the game. But the idea of raising a disabled child never found its way into any of our fantasies over the last few months, and I knew if it came down to it I would wind up playing God -and I am hardly qualified.

I told M the good news as soon as I hung up the phone. We both felt the burden that had been hanging about our necks since August 15th lift and we settled in to savor the coming months with lighter hearts.