Heather first noticed something was different about her daughter at four months. There was a significant ridge on the back of Campbell's head. The pediatrician told Heather to be patient. It was probably just positional molding, a common condition caused by infants who sleep on their backs and flatten the back of their heads.

As Campbell began to crawl, Heather noticed her head was becoming more misshapen. At six months, her ears were no longer aligned. The right ear was higher than the left. Campbell also tilted her head toward her left shoulder, as if it was too heavy to lift. Otherwise, Campbell was hitting all the developmental milestones.

After an X-ray and CT scan, her pediatrician confirmed that Heather's concerns were right. Rather than deformational plagiocephaly, Campbell had craniosynostosis, a condition that occurs when one or more of the sutures in the skull close too early.

The skull is made up of five major bones, or plates, that are separated by spaces called sutures.  These sutures are fibrous connections between the bone plates of the skull. "If it weren't for these, everyone would have a rigid skull that would not be able to deform to fit through the birth canal and everyone would have to be born by C-section," said Dr. Rick Boop, Campbell's neurosurgeon.

Sutures are also growth centers.  They grow together over time to form a solid skull.  The timing in which they grow together is what determines each individual's head shape.

In Campbell's case, the right lambdoid suture in the back of her head was stenosed. Lambdoid synostosis is one of the rarest forms of craniosynostosis and is easily confused for positional molding, Boop said. "Single suture synostosis rarely affects brain growth but some other forms of craniosynostosis can significantly affect brain development and vision as well."

Heather, who is a nurse, started doing research. She searched the Internet and talked to experts. They directed her to Dr. Rick Boop, one of Le Bonheur's nationally recognized neurosurgeons. Through the University of Tennessee Medical Group, he operates a clinic with plastic surgeon Dr. Robert Wallace specializing on pediatric craniofacial surgery.

Heather says she felt comfortable with the doctors immediately. "I felt we're in the right place and this will be better," she says.

"The saw cuts and reconstruction that we have made have given her some immediate improvement, but they have also allowed her skull to grow in a more normal shape such that over the next year or two there will be continued improvements in her head shape," Boop said.

Surgery lasted five hours and Campbell experienced bruising on her face and around her eyes.

"We both had a lot of confidence in the doctors but we were still very scared and anxious. We felt a little more relief as each doctor came in after surgery," Heather said. "To us, it meant we were closer to seeing her and we knew that things were going well and that she was doing well."

Heather's nursing background has been helpful as she's navigated the medical system. She has advice for other parents whose children have craniosynostosis. "Do as much research you can. You can't give up. Find out what your resources are," she says.

Please  click here to read more about other special children whose lives were saved by Le Bonheur's excellent care.