Boy With Rare Disease Gets Surgery to Smile

Feb. 28, 2014— -- Dawson Barnett is the class comedian – an unlikely role for the boy born unable to smile.

Dawson, 6, has Moebius syndrome, a rare neurological disorder that paralyzes the muscles that control facial expression. But thanks to surgery that rerouted a nerve and “borrowed” muscle from his thigh, the “happy-go-lucky” first grader finally has a fitting grin.

“He loves to be the class clown,” said Dawson’s mom, Sarah Barnett. “And now he has the expression to go with it.”

In two 10-hour operations, plastic surgeons at Children’s Hospital of St. Louis transplanted muscle from Dawson’s legs into his cheeks, tethering his temples to the corners of his mouth. They then redirected a nerve normally used for chewing and “hooked up” a new blood supply, according to lead surgeon, Dr. Alison Snyder-Warwick.

“Obviously for patients and their families, this can be quite an emotional roller coaster,” said Snyder-Warwick, director of the hospital’s Facial Nerve Institute, explaining how it can take up to six months for the relocated muscles and nerves to start working. “It’s not an immediate transformation. But when they get to see a smile, you can just imagine how satisfying that is.”

Dawson cracked his first smile just six weeks after the second surgery in August – just in time for his school picture.

“I was so happy,” Sarah Barnett said. “He healed beautifully and was cheerful throughout the whole process.”

But it took time for Dawson to learn how to control his smile. Unlike his classmates, he has to think about smiling and bite down to curl up the corners of his mouth.

“We just have to remind him when to smile,” said Sarah Barnett. “We say, ‘Are you happy? Then what should you be doing?”

Over time, Dawson will likely learn to smile spontaneously, according to Snyder-Warwick. He had a hint of a spontaneous smile after playing a prank on his physical therapist.

“We all screamed and he said, ‘What?’” Snyder-Warwick said. “He really has a big personality for such a little person.”

Dawson has also had surgery for webbed fingers and gastroschisis – a birth defect in which the intestines protrude from the baby’s belly. But now he’s looking forward with a smile.

“At first he didn't like it because it’s different from other smiles,” said Sarah Barnett. “But I think he’s getting used to it now.”