Julie Cooper is on auto-pilot, off-handedly issuing the kind of directive that mothers need on tape, they repeat it so often in so many variations: `Sweetheart, please put the scissors down before you really hurt yourself.`
Five-year-old Katie's fingers are long, tapered and a tad clumsy when it comes to fine motor skills. That's because of her genetic disorder, Velo-Cardio-Facial Syndrome -- a disorder that took almost three years to diagnose, a disorder that Katie's mother is determined to make people pay attention to.
Katie, who hands are green from an afternoon of art projects, continues cutting teeny tiny bits of paper, littering the Oriental carpet in the family room.
"Mommy, do I cry when I get hurt?" she asks. "Am I brave?"
Cooper regards Katie with the kind of look parents get when it dawns on them that their kids require not only ballet lessons, Beenie Babies and protection from sharp objects, but also answers to profound questions.
"You are brave," the mother affirms with a quiet intensity. "You are very, very brave. You're one of the bravest kids I ever met."
As a nurse who worked for 10 years in the Sinai Hospital nursery before she gave birth to Katie, Julie Cooper is something of an expert on brave kids -- and on sick kids.
From birth, Cooper suspected something was wrong with her daughter. Katie was the floppiest, thinnest, tiniest, fussiest, most fragile of newborns. She'd breathe too hard, too noisily, too fast. Worse, she'd stop altogether, turn blue and require resuscitation.
In the nursery, Cooper had coached new moms on how to nurse their newborns. Her own daughter, she couldn't get to breast-feed no matter what she tried.
Katie didn't get a handful of ear infections or even a dozen; she got more than 80. Katie didn't catch occasional upper respiratory infections; she suffered from incessant colds and fevers.
When she would decide to eat, it was only soft foods. Even those, she'd throw up through her nose.
She'd cry all day in a funny, nasal way; fuss all night. There was no happy babbling that led to a first word. She was the most confounding child Cooper had ever encountered. Worst of all, none of the growing list of clinicians they visited would take seriously Cooper's gnawing certainty that something must be wrong -- let alone tell her what the problem was and advise her how to fix it.
Katie's former pediatrician all but brushed aside Cooper's concerns as those of an overanxious new mother, even though Cooper, 36, is a registered nurse, and she and her husband, Brian, are the parents of an older son, Alex, now 9.
Not once, but three times, Cooper remembers asking the pediatrician: "Do you think my child has a syndrome?"
"I told her that on a bad hair day, Katie looked to me like an FLK" (nursing slang that means "funny looking kid"), Cooper says. "They're cute, but they look a little different. "And the pediatrician said: 'That's perfectly ridiculous.'"
Cooper wanted to believe her. But Katie wouldn't allow it.
She took the baby to others for second opinions. A nutritionist. A developmental pediatrician. A swallowing specialist who put his hand on her shoulder and said: "Honey, go home and get some sleep. She's fine."
"Well P.S.," Cooper clears her throat for emphasis. "She really wasn't. She almost died. I almost lost my daughter."
Everything finally came into focus when Katie was 3. Cooper had changed pediatricians after much agonizing. During the very first week that she was a patient at the new practice, Katie became sick with a high fever and labored breathing. The pediatrician was concerned enough to send her to Johns Hopkins Hospital.
There, pulmonologists found out that her aorta was wrapped around her lungs, esophagus and trachea, and compressing them. She was in urgent need of heart surgery.
As upsetting as that was, Cooper remembers feeling a wave of relief: Here was an answer. But she felt compelled at that point -- now that doctors were listening to her -- to mention Katie's hearing loss. And her speech problems. She asked again: Could Katie have a syndrome? A genetic test was ordered.
"But I was thinking the heart surgery was going to solve all our problems," Cooper says. "I had a lot of confidence. She seemed much better after surgery, even though she had some permanent lung damage."
Months later, Katie was napping when the phone rang. A voice on the other end linked Katie's name to Velo-Cardio-Facial Syndrome.
Cooper scrounged around for a piece of paper on which to write down the unfamiliar words. Finally, an answer, albeit one that left Cooper feeling frightened and full of questions. She'd never heard of Velo-Cardio-Facial Syndrome, a genetic disorder nearly as common as Down Syndrome. It occurs in 1 out of 2,000 live births but is virtually unknown by the public and more often than not misdiagnosed by the medical community.