Most of my posts are going to be funny (or at least they’ll try to be). This post, though, has been much harder for me to write, probably because it touches on some very real and very tough emotional times my wife and I went through.
In the early fall of 2010, my wife had a blood test that indicated she was pregnant. Ever since we got married in 2006, we’d discussed having children and had finally decided we were ready to be parents. So we were excited when we got the good news.
Now, if you’re doing the math, you’ve figured out things didn’t go exactly as planned–or that my son gestated for an exceptionally long 21 months.
There’s this strange thing called a molar pregnancy. You can click the link if you want to know what the heck that is. The odds of being lucky enough to suffer one of these are 1 in 1,500.
We were the one.
We’d had a celebratory dinner with Natalie’s parents, told our families and a few friends, started picking out names, thought about where the nursery was going to be. When we went to the first OB/GYN appointment in October, they couldn’t find the baby’s heartbeat, but I wasn’t too concerned. The nurse said at such an early stage in the pregnancy, it wasn’t uncommon. Statistically speaking, the embryo is so tiny at that point that sometimes they can’t find it without a full-blown ultrasound. The appointment went longer than expected and I ended up having to leave to go back to work–I’m a teacher, and I had an after-school commitment to tutor some kids. I was excited about our new family.
When I left school, I noticed a voicemail from my mother-in-law. It turned out there was a different reason they couldn’t find the heartbeat. Natalie was getting emergency blood work in preparation for a surgery to remove the mole.
The rest of that month was a blur. Actually, looking back, the rest of that year was a blur, and much of 2011 as well.
That’s why when we found out last September that we were pregnant again, we were understandably worried. We didn’t tell anyone except close family until we were well into the second trimester. My wife cried when we first saw the baby on an ultrasound. I may have cried a little too.
In November my wife had a prescribed screening procedure done, a quad screen to check for various abnormalities. None of the doctors told us to skip it, but if we had realized what it is, what it can and cannot tell you, we would have just said no thanks. Like the name says, it’s a screening test–not a diagnostic test.
The results came back with a flag for Down syndrome. The doctor told us not to worry about it, that in most cases these results meant nothing. It wasn’t diagnostic, just a screening.
Sure, we said. No problem! We won’t consider the fact that our child may have a genetic disorder that will drastically change both his life and ours.
The best part was they gave us odds. 1 in 24, meaning that out of every 24 women that received the results Natalie did, one of them would have a child with Down’s.
Numbers are cold, hard, implacable things. They can’t relate the feelings or emotions associated with this kind of information. And given we’d already hit the statistical lottery with our molar pregnancy…well, there were a few sleepless nights.
We had to go and get a special ultrasound, which we both took off work for. The procedure involved a cranky ultrasound doctor and a genetic specialist who asked us, with the sincerity of a door-to-door missionary, “Do you know why you’re here?”
My existential answer (do any of us know why we’re here?) was not well received. The great news was that the ultrasound took our odds down to 1:48. Just a little over 2% chance. As the cranky ultrasound tech told us, though, even this special ultrasound was not diagnostic. “An ultrasound can’t tell you if a baby has Down syndrome. No way, no how.”
Now we were cranky because we’d used personal days to take yet another test that resolved nothing. The genetic specialist did say they could do an amniocentesis, which is diagnostic. It’s very safe, with a risk of miscarriage somewhere around 1:400. Those damned statistics again. We declined.
It turns out that, at least in the case of Down syndrome, there’s no difference in prenatal care for the mother. There’s also no extra preparation in terms of what we needed at home. People use the test to prepare themselves mentally or, alternatively, to decide whether to terminate the pregnancy.
Down syndrome isn’t a death sentence, and we both agreed that if our little guy had it, he’d still be our little guy. We’d love him and care for him the best we could. Still, I doubt there is any parent who hopes for a kid with Down’s.
The heartbreaking thing is, statistics (generally speaking) don’t lie. So in a sample of 48 sets of parents who got the same quad screen results, there is one couple who did not beat the odds. The doctors probably told that couple all the same things they told us–these results don’t really mean anything, it’s no reason to worry, everything will (most likely) be fine, it’s not a diagnosis. And part of me is glad we were not the lucky couple this time.
Now, out of all this there were two things that made me really cranky. First, I took a personal day for a test that was not diagnostic and didn’t assuage our fears at all, and we had to sit through the “why you’re here” talk, which didn’t offer anything beyond what you could find on Web MD. This also meant I had to take a day without pay after Wolfe was born to help my wife get around after her C-section. The second thing that upset me was that none of the doctors who gave us the screening results addressed the issue after our son was born. In fact, of the 1,200 (give or take) doctors who checked him out at the hospital, only one addressed it at all. He said we’d have to get blood testing done to be sure, but he’d bet Wolfe didn’t have Down’s. He liked the odds.