TMI: When Should Doctors Keep Their Mouths Shut?Ceridwen Morris
If you’re in your first trimester, or you’ve ever been frightened by information given from an ultrasound, I highly recommend reading Nina Misuraca Ignaczak’s piece about the “soft markers” for chromosomal abnormalities. Ignaczak writes about a personal experience, but it’s one that happens to so many women, and it’s not discussed nearly enough.
It happened to me. At my 20 week ultrasound– the “anatomical scan,” during which the technician measures all of the body parts, looking for anything out of the ordinary– I was told there was a calcification in the baby’s heart.
As the technician moved her wand over my belly, and images came in and out of focus on the screen, she’d say things like, “here’s the femur”, “here’s the stomach.” When we came to the heart I saw the black spot (on an ultrasound, black = solids, white = fluids) and I asked, “why is there a black spot on there?”
She didn’t say anything, which worried me a little. Then she brought in the head doctor who explained it was a calcification but that all should be OK.
I went home and looked it up. It’s a “soft marker” for Down syndrome. It’s also called echogenic foli and shows in about 4% of fetuses. Mostly it just goes away as the baby develops. But, in combination with other signs or markers, it is associated with Down syndrome.
I had not had an amnio, but I’d had the Nuchal screening and blood test which showed with 99% accuracy that my chances for having a baby with a trisomy such as Down syndrome was the equivalent of a 27 year old: low.
I talked to my midwife, a genetic counselor and the head ultrasound technician that afternoon: All of them reassured me that, on it’s own, the “soft marker” was statistically insignificant. In combination with other signs of chromosomal abnormalities, maybe they’d recommend invasive prenatal testing. I was now at 20 weeks– the idea of terminating made me sick. The idea of not knowing made me sick. The idea of a chunk of solid mass in my baby’s heart made me sick. The idea of a miscarriage from an amnio–given because I was (perhaps unnecessarily) worried– made me sick. I was a wreck.
Everyone kept telling me to do whatever felt right to me. Finally I called a genetic counselor who advised on the pregnancy and baby book I co-authored some years back. I tried with all my might to pry a subjective opinion out of her. I coaxed, I begged. I asked, “what would you do?” But she’d been well-trained. And she’s a good friend. She kept repeating the truth which is that on it’s own, this soft marker is statistically insignificant. It’s a “normal variant.”
Now, in my story I’d played a part in getting this information. In Ignaczak’s story, she was flat out told that her baby had a soft marker for Edward’s syndrome, a serious and fatal chromosomal abnormality. She was also told that the information was statistically insignificant. She also worried through her whole pregnancy, and even after she had her healthy baby in her arms, that something could be wrong. Many other women are given this “meaningless” information and then left out to dry. Ignaczak wonders if we should be told this kind of information at all.
I worried all the way through my pregnancy. I didn’t get an amnio at 20 weeks. I was very rational. I told myself to be rational: I repeated “statistically insignificant” over and over, like a mantra. I went over the odds and the reasoning many times with my husband. But sometimes late at night the anxiety would swell up. The feeling was not as specific as the condition my daughter may have been born with: it had gone from a more focused concern with the heart, to an a much more overwhelming fear that she was “not OK.”
Last night I talked to my cousin who is so excited about having his first child. Soon they’ll have the 20 week scan he told me, thrilled at the idea of getting to spend a full hour looking at his baby. But the first thing I thought of were the dreaded “soft markers.” If they really are statistically insignificant, then why ruin a perfectly happy pregnancy?