Common Birth Defect Spurs Mom to Offer Uncommon Care – By JoNel Aleccia for The Seattle Times
Anthony James Davidson, age 6, is happy to show strangers his “zoop-zoop.”
That’s what the Seattle kindergartner calls the scar that zigzags across the top of his head, barely hidden by dark hair, permanent evidence that he was among the one in every 2,000 babies born with a birth defect that most parents don’t recognize — and can’t pronounce.
The boy, who goes by A.J., was diagnosed at 4 months with craniosynostosis — (kray-nee-o-sin-os-TOE-sis) — a condition in which one or more joints in a newborn’s skull fuse prematurely, preventing the brain from growing normally and leaving the baby with a misshapen head. He had surgery at 8 months, and then last summer, when it appeared his skull was closing again.
A.J. says his scar is cool, but his mother, Shelby Davidson, 36, knows the fear and uncertainty that accompany the multihour surgery required to expand an infant’s skull.
For four years, she and Summer Ehmann, who lives in Colorado, have collaborated to send care packages — small boxes containing information and handmade hats and blankets — to thousands of families each year facing craniosynostosis.
“One of our main goals is to spread awareness,” said Davidson, a co-founder of the nonprofit group Cranio Care Bears. “Nine out of 10 of these parents haven’t heard of this.”
Davidson was lucky. A.J. was treated at Seattle Children’s, where the hospital’s Craniofacial Center is among national leaders in treating craniosynostosis. Doctors there perform between 70 and 80 surgeries every year on babies newly diagnosed with the problem, said Dr. Michael Cunningham, the center’s medical director.
“It’s one of our most common diagnoses,” he said.
But most parents — and many pediatricians — don’t recognize the problem immediately, even though it’s present on the first day of life. “They think the head is molded from birth,” Cunningham said.
