Clara Beatty, born with Treacher Collins syndrome, learns to face the world
(CBS/AP) Before their daughter was born, Clara Beatty's parents knew she wouldn't look like everyone else. Janet and Eric Beatty knew that their daughter would be born with Treacher Collins syndrome, a condition caused by a genetic mutation that leads to facial deformities.
Clara's journey: 9-year-old with deformed face navigates the world
But when given the option to abort, the Beattys wouldn't hear of it. They say it wasn't any big moral statement, "there was just no question."
"It was kind of strange sometimes, with the doctors, some of whom I think really, really questioned why we had this baby," Eric Beatty said.
Treacher Collins syndrome affects the development of bones and other tissues in the face. Symptoms vary greatly among those affected, but most people with the condition have underdeveloped facial bones, particularly the cheek bones, and a very small jaw and chin. Some people with this condition are also born with an opening in the roof of the mouth called a cleft palate. In severe cases, like Clara's, underdevelopment of the facial bones may restrict an affected infant's airway, causing potentially life-threatening respiratory problems. Defects in the middle ear (which contains three small bones that transmit sound) cause hearing loss in about half of cases. People with Treacher Collins syndrome usually have normal intelligence.
After Clara was born, the Beattys moved from Belgium back to the U.S. for family support and medical care. The family had 24-hour nursing care for the first three years of Clara's life because she vomited so frequently.
Despite her condition, Clara was able to cope well, sometimes better than her parents. Today, Janet Beatty is astounded at how well her youngest daughter 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 gets frustrated. Now 9 years old, she says she looks forward to the day a few years from now when her skull will have grown enough for cosmetic surgery. It won't "fix" things, but likely will help her blend more - and possibly help her get rid of the breathing tube.
"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.
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.
Clara is known at her home, school, and church, as the funny, kind girl who wants to be a doctor when she grows up. Clara is quick to help her classmates with homework after she finishes her own. She also volunteers as a mentor at the Special Gifts Theatre, an acting troupe for children with special needs. One cognitively impaired girl needed help with her lines.
"It's fun," Clara says, "to help someone and give them a better chance at life."
People often assume that Clara can't speak or understand them. Her classmates at school, however, are perplexed that a reporter would be doing a story about her.
"Why?" one asks.
"Because Clara is awesome!" another quickly replies.
The support is heartening, her parents say. This is what they hoped for their daughter, that she would be accepted, well-adjusted and confident - though they also know that she has many challenges.
"We're all learning that we're just going to do what we're going to do, and we're not going to pay attention to what other people think," Janet Beatty says.
Still, the urge to protect will always be there.
"I just don't want her spirit to ever be crushed so much that she can't recover," she adds. "That's why it's good that she has the thick skin. I just want to keep it thick. She needs it."
The National Institutes of Health has more on Treacher Collins syndrome.
