TODAY'S PAPER
64° Good Evening
64° Good Evening
NewsHealth

Girl with deformities learns to adapt

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 their third child was likely to be perfectly normal inside. But, even in the womb, doctors could see severe facial deformities -- droopy eyes, underdeveloped cheekbones and a tiny jaw. It meant she'd need a tube in her neck to help her breathe. The lack of an outer ear and restricted ear canals 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. The Beattys wouldn't hear of it.

"There was just no question," Janet Beatty says. No wavering, despite the looks of disapproval from the medical staff before Clara 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 for family support and to seek care at Children's Memorial Hospital in Chicago and other institutions. There were breathing and feeding issues.

The family had 24-hour nursing care for the first three years.

A note to our community:

As a public service, this article is available for all. Newsday readers support our strong local journalism by subscribing.  Please show you value this important work by becoming a subscriber now.

SUBSCRIBE

Cancel anytime

Still, it took a toll, especially on Clara's mom. Janet Beatty just wanted her daughter to be OK physically, to not be constantly worried that she might stop breathing, or choke.

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.

And as her parents discovered, Clara was quite able to cope. Her mom is astounded at how well she navigates the world. "Even when she was little, you could look at her and people would say there's an old soul in there," she says. "She just had these big eyes and you could see her taking everything in."

Certainly, there are times when Clara, now 9 and finishing the fourth grade, gets frustrated.

"I want to try to make myself as much like the other kids, so that I can stop having everyone asking me questions," Clara says, "because it gets so annoying." She says it matter-of-factly -- not like she's hurt or damaged by the questions and comments.

To friends, she is just Clara, the funny, kind girl who wants to be a doctor, who's quick to help classmates with homework. She is a mentor at the Special Gifts Theatre, an acting troupe for children with special needs.

Is Clara more likely to worry about her appearance when she reaches adolescence? "Those are hard things to think about in a world where . . . the way you look, is so much a part of society and how people react," says Eric Beatty, vice president of a manufacturing company. "But as any parent will know, you just get on with life."

A note to our community:

As a public service, this article is available for all. Newsday readers support our strong local journalism by subscribing.  Please show you value this important work by becoming a subscriber now.

SUBSCRIBE

Cancel anytime

Health