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Barrow Patient Shares Story for Cleft and Craniofacial Awareness and Prevention Month

sarahwoolworthLike many other 20-year-olds, Sarah Woolworth balances college classes with a part-time job, enjoys a good Netflix binge, and listens to Taylor Swift songs.

“When season three of Orange is the New Black came out, I watched that in two days,” she said.

But unlike many other young adults, Woolworth has called a hospital her “second home” for most of her life.

“I knew my surgeon, Dr. Beals, before I was born,” she said.

Woolworth has a rare hereditary condition known as Treacher Collins syndrome, which affects the development of bones and other tissues in the face. She had her first appointment at the Barrow Cleft and Craniofacial Center when she was only a newborn.

At 3 months old, Woolworth had a tracheostomy to create a hole in the front of her neck where a tube could be inserted to open up her airways.

“One lung was working harder than the other, so they had to put it in,” she said. “I basically had a tracheostomy tube all my life.”

But now she wears a Hello Kitty bandage over the incision where the tube used to be.

“It feels pretty weird,” she said. “In all of my school pictures from preschool until I graduated high school, I had the tracheostomy tube, and now it’s just not there.”

Woolworth’s breathing improved after Dr. Stephen Beals, co-medical director of the Barrow Cleft and Craniofacial Center, performed surgery on her jaw in October.

She took a semester off from school to have the surgery but has since returned to Paradise Valley Community College to continue studying elementary education.

“Sarah is a shining example of how successful in life a craniofacial patient can be,” said craniofacial orthodontist and co-medical director Dr. Patricia Glick. “She has followed her complicated treatment timeline and can now get back to her studies in college after her surgical interventions. We are proud of her tenacity and her accomplishments.”

Glick’s full-time practice is located at the Cleft and Craniofacial Center, which is also staffed with specialists in speech pathology, psychology, ophthalmology, otolaryngology, and other areas so that people can see everyone involved in their care in a single visit.

“We provide psychological support, educational workshops, and socialization to help patients feel safe and accepted,” Beals said. “We provide a safety net that can help examine, process, and alleviate fears about school and relationships.”

Woolworth said she has made several friends at the center, where she recently hosted a book club to discuss a novel about a boy with craniofacial differences who enters public school for the first time.

“It’s been gratifying watching Sarah grow through her childhood into her teen years,” Beals said. “She has approached her craniofacial difference with positive energy and a cheerful attitude. We are proud of Sarah and admire her.”

Woolworth will continue to visit the Cleft and Craniofacial Center until she gets her braces off, which she hopes will be in about six months.

After she leaves the center as a patient, she hopes to return as a volunteer.

“They’ve given a lot to me in my lifetime as far as support and medical care and everything,” she said. “This is probably the best place you can come for anything.”

About Barrow Neurological Institute

Since our doors opened as a regional specialty center in 1962, we have grown into one of the premier destinations in the world for neurology and neurosurgery. Our experienced, highly skilled, and comprehensive team of neurological specialists can provide you with a complete spectrum of care–from diagnosis through outpatient neurorehabilitation–under one roof. Barrow Neurological Institute: Discover. Educate. Heal.