Guillotine by another name

25 Apr

The other day I interviewed a family whose daughter has Spina Bifada, a condition where the baby’s spine and backbone doesn’t close all the way in the womb. Picture a zipper that gets stuck and won’t zipper down completely. That’s Spina Bifida.

As I walked into the interview, into their home, I was shocked. The baby, Emily, was beautiful. I guess I expected her to look sickly.

She looked bright and healthy like any other year-old baby. But she’s not. Her mother has to help her pee ever four hours, and she’ll never wear anything but diapers. The physical therapist comes twice a week to help her learn normal baby things like rolling over. Water therapy is once a week.

She has a shunt in her brain. It carries the fluid that collects there to her abdomen. When she was two days old a surgeon in Philadelphia closed the hole at the base of her spine where her nerve endings splayed out like an electrical wire gone array.

Emily is wearing blue jeans. Her tiny feet stick out from them, but they’re not wiggling because she cannot even if she wanted to. The nerves are damaged. When she’s older, she’ll either be in crutches or a wheel chair.

Her ruffly, white and blue shirt looks adorable on her. Her eyes are big and bright, her cheeks rosy. She cries when she sees me, a stranger. Her father calms her by picking her up and bouncing her around their living room.

When Emily’s mother tells me about the casualness of the doctors asking her whether she wanted to terminate the pregnancy aka abort the baby, I squeeze back the tears I feel pushing to the front of my eyes. Reporters aren’t supposed to cry. We report.

I look at Emily: imperfect but beautiful in the arms of her father, whose love has made her whole.

And I wonder what kind of cruel world we live in where it’s normal to snuff life.

Then I get mad. Who sets the standards, anyway? How is a doctor asking a confused mother whether she wants to abort her less than perfect baby any different from the regimes we criticize in history books, the ones where millions were murdered because they didn’t fit another’s ideal.

A new reign of terror has arisen. It’s upon those who have no voice, and the guillotine falls by another name: choice.




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