Today’s medical advances mean that babies born prematurely are much more likely to survive. Time magazine’s recent cover story, “Saving Preemies,” which I’m not linking to because the first thing you’ll see is a very triggery picture of a small baby hooked up to lots of machines, was a fabulous reflection on the medical advances and the increasingly positive statistics for premature babies.
When I was at the NICU, our doctors wouldn’t give us odds. They told us, kindly, that the only statistic that mattered was the statistic of one that was right in front of us. Now I know, however, that Anderson, born at 24 weeks, had only a 58% chance of leaving the hospital alive. Were he to do so, he had only a 20% chance of not having a significant physical or developmental disability. Those odds, ironically, comfort me.
I know that seems like an odd thing to be comforted by. But here’s the thing. When he was in the NICU, I received several letters and phone calls from others, reassuring me that they had preemie babies, too. “Preemies are stronger than you know!” they’d cheerily reassure me. “My baby(ies) made it, yours will too!” “Medicine has come so far! He’s in the best place!” I was given links to blogs for twins who were born at 29 weeks weighing two pounds. I was contacted by a colleague whose three children were all NICU babies, and despite all the medical challenges, they survived and thrived and are now high school track stars. Possibly the worst, though, was a well-meaning woman in our newcomers group at church, bouncing her now 8-month-old baby on her lap. “My son was a preemie too! He was born at 37 weeks. He had to spend five days in the NICU and it was the worst!” K saw my face as I tried to smile. “Thirty-seven weeks isn’t premature,” I hissed to K as she guided me away. “How dare she try to compare her experience to ours!”
I know this church lady was just trying to find a way to connect with us. But it made me so angry, and partly because this particular conversation was after Anderson had died (which she knew). But also because it was just one more instance in which I was reminded that many, many other preemies lived, and mine died.
Now, I’m slightly more comforted, and it’s partly thanks to those statistics. I know that Ander was younger and smaller than all of the other peoples’ preemies, and therefore had a much smaller chance of surviving and thriving. I’m more conscious about not being the type of woman who wears her grief like a badge of defiance, of differentiation, of specialness. I don’t want to be the woman who goes around saying, “Yes, but MY baby was smaller. MY baby was younger. That makes MY experience worse than yours, other preemie parents.”
It’s hard, though. K and I signed up to do the March of Dimes walk with our hospital NICU team. We thought it would be fitting, as it was the day after his intended due date. We raised more money than I’ve ever raised for similar events, and we were looking forward to seeing our doctors and nurses again.
It turned out to be awful. First, the weather was crappy, drizzly, bone-chillingly cold for late April. And then – there were so many babies. So many toddlers. So many young children who had not only survived prematurity but thrived to skip along with their extended families in this celebratory walk of life. Yes, there were other parents with shirts that memorialized their little angels, but often they were walking with large groups, while our families were walking in Denver, in Albany, in New Haven (not that that wasn’t wonderful). But all I could focus on were those with shirts celebrating the babies who lived. I was drawn to those, especially, of babies who were born at 23, 24, 25 weeks. Who weighed less than two pounds. Whose odds were the same as Ander’s. It seemed as though every back of every shirt announced that yet another baby had lived, while mine had died. I was reminded, mile after mile, of just how un-special we were, how unlucky.
The walk ended, but the March of Dimes ads that parade across my FB feed and nearly every page I look at have not, no matter how many times I tell them “I don’t want to see this.” I still support the March of Dimes and greatly admire all the work that they do. But purging my world of the reminders of “preemies who survived” and focusing instead on those statistics (58%! 20%!) is how I’m coping, today, with not being one of the lucky ones.