Is prenatal testing right for you? One mom’s tragic choice

I was in my very late 30s by the time I first got pregnant. I was elated. No more Clomid, no more Bataan Sex March (joke credit: my friend Marjorie), no more excuses for baby showers too painful to attend. I ran out and bought a rite-of-passage book I later came to loathe, one that may or may not rhyme with, “What to eject when you’re dissecting.” I flipped to 10 weeks and 25 weeks and beyond and got very, very excited. I told a few friends; we giggled and squealed and cried.

Then all of a sudden, it got less fun. My OB mentioned prenatal tests: Oh, right. We had some decisions to make. I knew I wanted to do some testing – that was not a question. But which? Amniocentesis, which these days is pretty darn safe but would require waiting eons and then – God forbid – the remote possibility of having to make that much more ghastly decision? Or chorionic villus sampling (CVS), which – given all the ultra-experienced doctors in New York – was just about as safe and could be performed blessedly early, at only 12 weeks? Or what if I just did the nuchal translucency (now morphed into what’s called the first trimester screen): 100 percent safe but not definitive and at that time infamous for misleading, false-alarm results after which, given the timing, all you can do is squirm until the amnio?

Such a brutally tough call. I talked to friends, I spread-sheeted statistics, I lay awake. I remember railing, in my mind, against our culture’s classic, uncomplicated pregnancy narrative in which all you do is see the pink lines, jump up and down, feel barfy, send out storky little cards at like eight weeks, pick a name and pack fuzzy slippers for the hospital. In actuality – mixed in with the joy, pregnancy also includes fear, doubt, excruciating decisions, the pins-and-needles feeling that you’re not “really” safe and tell-people, buy-a-belly-band pregnant until:until when? Until which test results give you the green light?

And so, nuchal vs. CVS vs. amnio? [WARNING: If you are pregnant and can't deal with horror stories, stop reading now.]

Here is the most important thing anyone told me when I was trying to decide what to do. My friend Marjorie of the Bataan Sex March said, “The statistics don’t matter. Decide what to do based on what you can live with.” I decided I could live with the slightly elevated risk of a 10- or 12-week CVS more than I could live with, nuchal or not, waiting on tenterhooks for definitive word until an 18- or 20-week amnio and possibly showing and even feeling a kick or two.

I chose CVS. Almost immediately thereafter, I lost most of my amniotic fluid. A week of bedrest didn’t help. We lost the baby – an otherwise healthy one – at 12 weeks. We were the one in 100, or whatever it is, depending. That was us. I am still not over it.

I got pregnant again without too much trouble, thank God. Needless to say, we did not do CVS. I did the nuchal, intending to follow up with amnio. And from the nuchal – exactly as I’d feared the first time around – we got agonizing results: a one in 16 chance of a serious abnormality. I had to wait an entire month, feeling only proto-pregnant, hesitant to even think about or “bond” with my belly, sick with worry. Please, not again.

The good news is not only that that pregnancy yielded – again, thank God – my healthy daughter, Bess (or that, two years later, she was joined by healthy Sam). It is that those nuchal results brought, alongside the terror, a shining sliver of vindication: See, that is why you do CVS, if that’s how you roll – to avoid this. I still felt my grief, but my self-blame and torment abated. Not entirely, but a whole, freeing, lot.

Given what I went through – and the fact that most in-depth discussion of prenatal testing these days focuses on whether or not to do it, not on how to decide what to do – perhaps my experience can help others figure out what’s right for them.

At some point in the near-ish future, pregnant women may have access to a non-invasive blood test that will replace CVS and amnio. Hallelujah. But in the meantime, this is what I tell friends making their testing choices: There is no right answer. There’s no mathematical formula that will yield magical protection from harm. Again, it’s what you can live with. The risk of early loss versus later, of knowing a little versus knowing a lot. You need to know all the facts, yes, but you also need to know yourself. It’s not easy, but you will know what – for you – feels right.

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