Doctors advised parents to abort girl born with deformed face, breathing troubles
Clara Beatty born with rare Treacher Collins syndrome
Clara Beatty, 9, looks at her mother while doing homework at their Winnetka, Ill., home.
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.
The next few years would be so challenging that the family moved back to the United States, both for family support and to seek medical care at Chicago's Children's Memorial Hospital and other institutions. There were breathing and feeding issues. The family had 24-hour nursing care for the first three years of Clara's life because she vomited so frequently.
They were lucky, they realized, to have that kind of help.
Still, it took a toll on Clara's parents, especially her mom. Janet Beatty just wanted her daughter to be OK physically, to not be constantly worried that she might stop breathing, or choke. She wanted her daughter to have the happy childhood that her other two children had had - free from the physical challenges and, yes, free from the constant stares of strangers when they were out in public.
Clara Beatty, 9, looks at her childhood photos on a computer with her mother. (Martha Irvine/AP)
"Make her normal," her mother, Janet Beatty, thought privately. "I want that normal kid. I didn't want people to stare, and I didn't want people running away from her."
Cosmetic surgery was an option. But on a child so young, it would have to be redone, over and over. It was better, doctors said, to wait until her teen years.