Sarah's Story: Scoliosis teen faces fear, helps others

Published On 04/06/2015

When 12-year-old Sarah Johnson first learned she likely had scoliosis, she burst into tears. Sarah had seen the disease’s effects first-hand. Her grandmother had severe scoliosis and was in constant pain.

After a slight curve in her spine was detected by her pediatrician at a routine visit in 2011, Sarah and her family chose Jeffrey Sawyer, MD, to be her doctor.

“Dr. Sawyer helped us find ways to let Sarah still be a normal kid. We’d give her one night off each week from wearing her brace,” said Sarah’s mom, Lindsay. Sarah usually chose Wednesday nights, when she had youth group meetings at church. She wanted to be able to sit in the beanbags. At their first visit to Le Bonheur/Campbell Clinic’s Pediatric Spine Center, an MRI revealed a 33-degree curve. She was fitted for a brace, which she wore consistently for two years.

In June 2013, Sarah hit a growth spurt, and her curve progressed to more than 40 degrees. At that point, Sawyer began to discuss surgery with the Johnsons. The brace had done all it could do.

Sarah underwent a spinal fusion the following February. The Johnsons chose to have her operation in the winter, so she’d recover in time for band camp in July. A straight-A student, Sarah kept up with her class work through a home-bound program for six weeks as she healed.

Now 16, Sarah created a YouTube video for other children like her with scoliosis. She hopes the video will ease others’ fears about scoliosis and surgery.