[a break from dissertating to reflect on personal things]
We had spent the afternoon in awe, of ourselves, of what we’d created, of the technology that allowed us to see this little creation rollicking, putting his hands in front of his face, shying away from the pictures the sonogram technician wanted to take. That afternoon we’d been given a pronoun—him—after months of fumbling around them. We’d been given pictures to take home and show to relatives and marvel over.
Then, after the goo was removed from my growing midsection, after we’d sent messages to the family members and friends who anxiously awaited news of a gender in far-off places, we saw a doctor who interpreted the pictures. She was not our normal doctor but a doctor at the special testing center with the fancy machines where we’d been sent to see our baby. She looked at the sonogram pictures for a moment, her face blank, then told us things looked fine except—except. There was a tiny shiny spot on our boy’s heart. A calcium deposit that meant nothing for his actual heart health, except that it could be a soft marker for a chromosomal disorder, most notably Down Syndrome.
To my credit, I think, I kept listening, even though I’d never in my life had a doctor’s visit like this one. Just the week before, my regular OB/GYN proclaimed me her favorite patient of the day because my medical history was so spotless. Now, I listened as the new doctor told us the odds. At my age, she said, the odds of having a child with Down Syndrome were 1 in 500 or 600.* With this “soft marker,” she would lower the odds to 1 in 200. In the days that followed, as I grappled with this news, this was the moment I focused on, the moment when she gave us the numbers: 1 in 200. I could picture that. I could picture 200 children and my child standing apart from them. I’m sure she followed this statement with other, more reassuring ones (I was relatively young, there were no other physical markers on the sonogram, it’s probably nothing), but they didn’t attract my focus like the moment when she told me the odds. In the haze of new words and a new vision for the future, the numbers were something solid on which to grasp.
Later, when my mind had cleared some, I did all I could to learn what those numbers really meant. The heart shine was called an Echogenic Intracardiac Focus (words that initially were hard to remember but have since become ingrained in me like an incantation, so often have I Googled them). It wasn’t particularly rare, and was seen in something like 5 to 10 percent of ultrasounds. (Couldn’t the doctor have stressed that a bit more, I wondered bitterly?) Studies had connected EIF with Down Syndrome in high risk pregnancies, pregnancies where other markers were seen or the mother was older, but the connection was far less certain in low risk ones, as I seemed to be. The thing was, I couldn’t be called low risk because I hadn’t had any genetic screenings done. My age, my lack of family history, and the fact that I was moving twice in the weeks when screening were typically performed led me to opt out. I cursed the decision now, even as I wondered what difference it would have made. All the screenings tell you are the odds.
I found this all out later, but the night of the sonogram, after all the joy that had come earlier in the day, I worried. I blamed myself. I felt out of control. My husband and I went to a baseball game we’d bought tickets for in the waiting room, in that buoyant moment after we’d had the sonogram but before we’d met with the doctor. At the game, I cried as I asked my husband to buy me a Coke, feeling guilty for the caffeine’s effects on my baby, but wanting the sugary solace nonetheless. The joy was entirely gone, replaced by a hollow fear for an uncertain future.
The next day I decided, as I’ve done from the time I was a little girl, to replace uncertainty with knowledge. I scoured the internet for everything that had been said about this beautiful-sounding, terrifying heart shine. And remarkably, given the internet’s ability to bring out the worst in humanity, I found comfort. I found hundreds of other women who had had a joyful moment overtaken by fear. I found them exhibiting kindness and empathy and reassurance. I found women posting to message boards desperate with worry and posting again 5 months later to assure the others there that their baby had been born, and it was “perfect.” I found not a single instance in which a child was born with a chromosomal disorder after an EIF was seen as an isolated marker. I found this wonderful article by a doctor who possessed the empathy that I wanted so desperately from my doctor, who had instead been blank-faced and told me the odds. I even found the most important study that had named this “soft marker” and learned that far more was not known about what this little calcium deposit meant than what it did.
Slowly, as my worry and anger at the medical establishment subsided and my little boy’s kicks grew stronger, I recognized that the desperate uncertainty I’d felt was something I would have to get used to. A dear friend who works as a nurse in a NICU reminded me of this: some babies with multiple markers are born screaming and healthy, and some babies with no markers are born early or sick or not breathing. We are never fully in control. When we are pregnant, we can control what we eat and drink and do and don’t do, but then a human being emerges and you only have so much control over what he eats and drinks and does and doesn’t do. At the baseball game on that terrible first night of knowing, I told my husband that if I cared so much about this little guy before he was even born, I didn’t see how I could possibly keep it up for the next several decades. It was exhausting. But, of course, I will, like my parents did and continue to do, like parents have done for always. Having a kid is going to be a grand experiment in lack of control, in caring more than a heart can take. Perhaps it’s best that I accept that now.
*I heard 1 in 500; Joe heard 1 in 600. Everything I’ve found online says that the odds of giving birth to a child with Down Syndrome at age 30 is more like 1 in 900 in 1 in 1,000. I don’t know where the doctor got this statistic.