Ballard mom gives support to parents of kids with rare condition

By Vanessa Radatus

On January 10, 2009, Ballard resident Shelby Davidson delivered her son Anthony by an emergency C-Section. After minor complications, she finally held him for the first time, relieved to see that he was perfect.

Four months later, however, she realized something was wrong. A sharp ridge was developing in the middle of her son’s head.

Shelby, 33, said she immediately took Anthony to see his pediatrician, who referred her to Seattle Children’s Hospital’s craniofacial clinic. Here she met Dr. Charlotte W. Lewis, who diagnosed Anthony with Sagittal Craniosynostosis. Shelby and her family had never heard of this rare condition before and learned the baby would need a five- to eight-hour surgery.

“It’s a parent’s worst nightmare to hear that your baby is going to need major surgery,” Shelby said. “The worst part is that I had no idea what to expect and the doctors could only explain so much.”

Craniosynostosis is a birth defect that affects 1 in every 2,000 births, where the sutures that connect individual skull bones on an infant’s head close prematurely. If not corrected, it stunts normal brain and skull growth. As the skull bones fuse early, pressure on the brain causes skull and facial bones to change from their normal, symmetrical appearance.

Symptoms vary from case to case but often an infant will have an unusually shaped head, an absence of the “soft spot” or a raised ridge along the affected sutures months after they are born. In rare cases, the deformity causes pressure to build up on the baby’s brain, which can cause brain damage, vision and hearing loss and make the baby develop more slowly than other children, Shelby said. Even more, hundreds of Craniosynostotis cases go misdiagnosed each year because of lack of awareness.

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