My Daughter’s Spine, 2

[An update to this post]

The spine doctor moves his mouse, figuring out how the two-dimensional images of my daughter’s vertebrae on the computer represent a three-dimensional thing—her spine. At the top and at the bottom, her spine looks straight. The vertebrae are stacked like symmetrical stepping stones, leading toward her brain. But the stones go awry in the lower-middle half. They curve left and then curve right, like whoever laid the road to her brain either really wanted to meander, or didn’t have symmetrical stones, so they used the best they could find.

The best they could find, we learn today, was a wedge-shaped, amorphous vertebra that forces the spine to curve 34 degrees in one direction, and two odd-shaped, chunky vertebrae that force the spine to curve 37 degrees in the other direction. One symmetrical vertebra separates the two problems, like the cells of her body suddenly remembered how to make a proper spine.

The good news: her spinal cord ends where it should. It’s not tethered. It’s free to hang loose. Apparently that’s what our spinal cords do: hang loose. I think of the slang of the phrase. My daughter’s spinal cord is relaxed, chill. No surgeon will need to go in and snip it.

And more good news: her scoliosis is not caused by any barred vertebrae, which would mean the vertebrae are linked together on one side, which would mean the vertebrae would continue to grow on the un-barred side and stay locked on the other. This would mean an ever-worsening scoliosis, and most definitely surgery.

There’s growth potential on all sides, the spine doctor said. He explained that we weren’t out of the woods just yet. Because the problem spans across four vertebrae, and because Fiona is incredibly small, and because operating on any vertebrae will essentially stunt her growth in that area forever, there’s no good reason to operate at this time. And because there’s growth potential on all sides, the curve just might improve.  So for now, we wait and see.

He stares some more at the screen. Though it’s obvious why her spine curves in one direction—one vertebrae is clearly only half-formed, a funky, white pebble mucking up the otherwise symmetrical alignment—he can’t quite determine why the two lower, chunky vertebrae are causing the curve in the opposite direction. Extra bone? he muses. He suspects extra bone. So we have one vertebra with not enough bone, and two other vertebrae with too much—just another wacky result of those 120 missing genes.

But here’s the wild thing, at least to me: Because her curve is 34 degrees in one direction and 37 degrees in the opposite direction, the abnormalities have the strange effect of giving her a near-zero degree curve. For now, they cancel each other out. This means that, currently, there’s no compensatory curve in the higher or lower parts of her spine. It’s like those unaffected vertebrae have no idea of the serpentine nature of her middle spine. They’re just plugging away with their beautiful, straight growth.

In other words, my daughter’s imperfections are perfectly imperfect. It’s hard not to hear the metaphor there.

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2 thoughts on “My Daughter’s Spine, 2

  1. Great post. I am an adult 35+ years post SCI. I had scoleosis in my teens. I wore a brace 23 hours a day for 5 years and spent a year in a body cast post spinal fusion. And I was lucky! I did not get what were called Herrington rods. Have you read essays from others whose curse are significant. As long at it does not cause pain or decrease lung function who the heck cares about the curve? I do not need or want a typical X-ray!

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