A Reason to Grin : Girl Unable to Smile Learns She Can Undergo Surgery

Seven-year-old Chelsey Thomas doesn’t know yet whether she has dimples.

Because of a rare neurological condition affecting the nerves in her face, the second-grader literally has never smiled. She can’t.

Precocious and energetic, Chelsey didn’t seem to mind terribly, until recently.

She had her pink in-line skates, bicycle motocross races, soccer practice and two big brothers to keep her busy.

But there was no getting around the sad side to the seldom-seen medical condition, called Moebius syndrome, that left her face nearly immobile.

The joys, triumphs and thrills in Chelsey’s life have gone unmarked by smiles. And in second grade, kids start noticing things that are different about their peers.

“Some kids think she’s not a nice person because she can’t smile,” said her mom.

“She feels bad when kids tease her. . . . She says all she wants to do is smile. She felt so strongly about it, she started asking seriously about having surgery.”

Because the condition is so rare--there may be only about a thousand known cases in the United States--specialists who can perform the particular type of microvascular surgery Chelsey must undergo are rare.

Chelsey’s parents met a surgeon from Toronto, Canada, who has successfully performed the delicate surgery, which takes place under a microscope and includes the use of instruments, including needles, thinner than a human hair. The surgeon, Dr. Ronald Zuker, has agreed to perform the surgery, Thomas said.

But the cost is about $70,000, experts said.

After several anxious weeks of waiting to find out whether the extraordinary expense would be covered by the family’s health insurance, a representative of Kaiser Permanente Medical Center in Woodland Hills called the Thomases with good news Monday night.

“She’s covered in full,” said Krista Hershey, a spokeswoman for Kaiser.

No date has been set for the surgery, but just the idea that she might be able to smile someday has energized the young girl, said her brother Brett, 14, who kept a watchful eye on Chelsey as she raced up and down their street Tuesday on in-line skates.

“She always tried not to let it get to her,” he said. “But now she’s got something big to look forward to.”

Until a few years ago, there was little information available about the condition. After searching in vain for others who were affected by the syndrome, Lori Thomas and Van Nuys resident Vicki McCarrell decided to organize the Moebius Syndrome Foundation and a support network.

“I was determined to find out something more than just the blurb about it in a medical book,” said McCarrell, whose 5-year-old son, Sean, has the syndrome. “So we started reading and contacting everybody we could who knew something about it. In 1991, we put out a three-page newsletter typed on a typewriter” and formed the foundation.

“Now, we’ve got close to 400 members around the world,” she said.

The most recent newsletter had 15 pages, and the pair organized the association’s first Moebius syndrome conference in July in Los Angeles.

McCarrell’s son says he doesn’t want to undergo the same kind of surgery Chelsey will have. “He’s happy now with the way he looks, and that’s important,” his mother said. But after Sean sees the results on Chelsey, he may change his mind, McCarrell said.

The surgical procedure Chelsey will undergo is complex, said Dr. Avron Daniller, chief of plastic surgery at Woodland Hills Medical Center.

First, two complete sets of muscles, veins and arteries must be extracted from her right and left thighs. The muscles will be transplanted in her cheeks, their upper ends attached beneath the eye sockets, the lower ends near the chin at the corners of her mouth.

Next, an expendable nerve that helps control chewing must be hooked into her new facial muscles, Daniller said. The nerve will take several weeks--or months, possibly--to grow into her new muscles and take control of them.

When it does, she should have the ability to smile by clenching her teeth as if she were chewing.

That day won’t come soon enough for Chelsey, who lacks the fear of the operating room common to many children her age: she watches the sometimes gory hospital dramas “ER,” “Chicago Hope” and “Rescue 911” devotedly, with an eye toward becoming a doctor.