WINNETKA, Ill. —
What if you knew, even before your child was born, that she wouldn’t look like everyone else?
Clara Beatty’s parents knew.
They were living in Belgium at the time, a decade ago. Prenatal screening was extensive, probably more than would have been done in the United States.
Those tests determined that baby Clara, their third child, was likely to be a perfectly normal kid inside. But even in the womb, doctors could see severe facial deformities — droopy eyes, under-developed cheekbones and a tiny jaw. It meant she’d need a tube in her neck to help her breathe after birth. The lack of an outer ear and restricted ear canals also would mean she’d have hearing aids by the time she was 6 months old.
In Belgium, it was unusual for babies to be born with Treacher Collins syndrome, caused by a genetic mutation. Parents almost always opted to abort, doctors said.
But the Beattys wouldn’t hear of it. It wasn’t any big moral statement, they say.
“There was just no question,” Janet Beatty says. No wavering, despite the looks of disapproval from the medical staff before she was born and even after, in the intensive care unit.
“It was kind of strange sometimes . with the doctors, some of whom I think really, really questioned why we had this baby,” says Eric Beatty, Clara’s dad.
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