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People Top 5
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- July 15, 1996
- Vol. 46
- No. 3
Chelsey Gets Her Smile
Born with a Rare Disorder That Left Her Face Expressionless, Chelsey Thomas Braved Two Operations and Now Has Plenty to Grin About
Lori's excitement—rapture, even—is something beyond mere motherly devotion. All through her daughter's childhood, a smile had never flashed across Chelsey's face—not in baby snapshots, not on Santa's lap, not as she blew out the candles on her birthday cakes. From birth, Chelsey was afflicted with a rare medical condition known as Moebius syndrome, which causes paralysis of facial muscles, among other symptoms, and led to a troubling array of problems over the years—difficulty eating, for instance, and in pronouncing words. But the most psychologically traumatic result was that she simply could not smile.
Telling her story, Chelsey begins simply: "Once there was a girl who could not smile. All the kids always said to her, 'How come you can't smile?' The girl just walked away." Lori recalls the details of her daughter's life as a series of medical obstacles overcome almost miraculously—but not without sacrifice and effort on the part of her family. When Chelsey was born on June 29,1988—to Lori, 39, who runs a small home daycare center, and husband Bob, 40, a self-employed carpenter (already parents of Brett, now 15 and Todd, 11)—she wasn't breathing. Doctors were able to revive the baby immediately, but she was strangely unable to suckle. Lori had to feed her formula through a nasal tube (with little success because of an unusually narrow nasal passage). Chelsey also had a condition known as syndactyly: The fingers of both hands were fused. (A series of operations has since freed her fingers, though she has only four on her left hand.) At seven weeks, Chelsey was so weak from malnutrition and dehydration that she suddenly stopped breathing again. After giving her CPR, Lori rushed the baby back to the hospital, where doctors diagnosed her with Moebius, a genetic defect that afflicts fewer than 1,000 Americans and may involve not only fused fingers and a lack of facial expression but also tongue paralysis, difficulty with eye movement and, in 10 percent of cases, though not Chelsey's, retardation. Determined to nourish her child, Lori contrived a way to push the tube down the baby's throat. "Once she started getting nutrition," says Lori, "she did really well."
So well that Chelsey has defied all predictions. When she was 2, a speech pathologist told her parents she would never talk. "I believed her at first," Lori says. But despite partial paralysis of her tongue, Chelsey said her first words: "Mommy"..."Daddy"..."doggy." Because she spoke from the back of her throat, she was sometimes difficult to understand, but her cousin Felicia Wolford, now 7, served as interpreter. "When they were in preschool, I told the teacher, 'If you don't understand her, ask Felicia to translate,' " says Lori. "It's like a private language they have."
Last year, Chelsey was asked to name the kinds of things that made her laugh. Her answer was indistinct. Then Felicia translated: "She thinks farting is funny." Both girls dissolved in giggles. Despite early problems communicating, Chelsey, with the help of speech therapy, is making progress and is among the top students in her school. She is also something of a tomboy—"probably from growing up with us," says brother Brett—and has developed a toughness she combines with humor. Last year, when a neighborhood boy told her he didn't want to play handball with her because he thought Chelsey's fingers were too small, Chelsey marched home and wrote a protest letter, which she returned to deliver by hand: "Dear Alex, I hate your stinking guts. You make me vomit. You are scum between my toes. Love, Chelsey."
But her brave exterior couldn't shield her from kids who would make fun of the seemingly glum expression fixed on her face. When other kindergartners would ask what was wrong with Chelsey, Kelly Merlo, her teacher, would answer, "This is the way that God made Chelsey, and she's great and she can do everything anybody else can do." Of course, it was never that simple. "For a child to have a totally impassive face puts them at a marked disadvantage," says Paul Ekman, a San Francisco psychologist who has studied Moebius syndrome. "Not only from teasing but because people respond to them as [though they are] either uninterested or dumb." Many children with Moebius go on to suffer severe depression as adults.
Both Thomases vowed to help Chelsey avoid that fate, and Lori attacked her daughter's disability with single-minded determination. She sought out other parents of Moebius children and helped found the Moebius Syndrome Foundation, a support group that now boasts 600 members. Through her work she learned that surgery might be available to give Chelsey a smile. But the delicate operation had been performed only rarely and not always with complete success. And it was almost prohibitively expensive. "Besides," says Lori, "I was perfectly happy with her the way she was. I always thought she was pretty."
Then one morning when Chelsey was 5, Lori saw her looking at herself in the bathroom mirror while brushing her hair. "She was making what she considered to be her smile face and she said, 'I wish I could smile.' " When Lori warned her that it would require major surgery with anesthesia, Chelsey—whose favorite TV shows are ER and Rescue 911—was unfazed. "She is a very spunky child," says Kelly Merlo. "She has a great spirit. She was always excited to try something new." Still, her parents were concerned that the operation might not be successful.
Then in May 1994 Lori and Chelsey met with Dr. Ronald Zuker of Toronto, who had performed 30 of the procedures with good results. On a visit to California, Zuker examined Chelsey and determined she would be a suitable subject for his painstaking surgery, which is done under microscopes and requires sewing sutures many times thinner than human hair. The main obstacle was cost—about $70,000 for the two operations she would require—one for each side of her face. But last August the Thomases learned that Kaiser Permanente, their health insurance provider, would cover it. On a September visit to New York City, Lori met a 6-year-old who had undergone Zuker's surgery. "She smiled at me," recalls Lori, "and it was like, 'That's it.' "
In each surgery, doctors would remove a section of muscle from Chelsey's thigh and transplant it to her cheek. The first operation was set for last Nov. 17, but just as it was about to begin, doctors discovered a cold sore on her lip. There was a risk that the virus from the sore could spread to other areas of the body, so the procedure was postponed until Dec. 15.
On that day, Bob, Lori and Chelsey left their home at 4:45 a.m. for the one-hour drive to the Kaiser Permanente Medical Center in Woodland Hills. Chelsey brought along her battered doll Sara, brother Brett's Game Boy, a tape player and a couple of tapes—a Michael Jackson album and the soundtrack to Footloose. She was fine until a nurse who came to give her a presurgery shot made the mistake of spelling it out—"s-h-o-t"—for her parents. Chelsey, who had been coloring, stopped abruptly. "What did you say?" she asked. "I told the nurse, 'She knows about it now, so you may as well give it to her/ " says Lori. As Chelsey was wheeled into the operating room, "the last thing she said to us was, 'I love you, I love you,' " says Lori. "She kept saying that."
To describe the surgical process, Zuker, 52, invokes a Star Wars movie. "Remember that scene where they are going incredibly fast on flying vehicles into the Death Star?" he asks. "One slip and boom, it's over. That's what it's like." The first procedure—for Chelsey's left side—was a marathon lasting from 8:30 a.m. to 8 p.m. "Everything has to be done extremely meticulously," says Zuker. "There's no room for cutting corners." While Dr. Avron Daniller, who headed the team with Zuker, extracted a length of gracilis muscle—along with a section of its vein, artery and nerve—from Chelsey's left thigh, Zuker and other surgeons made a cut starting above her ear, following her jawline and ending on her neck. Then the skin was folded back and Zuker carefully placed the muscle in the cheek, experimenting with position and then sewing it into place. Next he connected the muscle's artery and vein to blood vessels in the face. The most exacting part of the operation is connecting the nerve from the transplanted muscle to an existing nerve in the face. "Each step has to be done with great care and exactly right," says Zuker, "because if one stitch is not in exactly the right place it could spell failure for the whole procedure."
A difficult recovery followed. "The first couple of days she was in pretty bad shape," Lori recalls. "Not in pain, but very exhausted, very out of it. I thought, 'Oh, my God, what have I done?' " Chelsey was so traumatized by the ordeal that when she was asked afterward if she was ready for the second operation, she said, "Not for about five years." Meanwhile, a recession in the California construction industry had made it increasingly difficult for Bob to find carpentry jobs. The emotional and financial roller coaster was beginning to take its toll on him and on the Thomases' marriage. "I think the strain was too much on Bob," says Lori. "My kids are very important to me, and so is Lori," says Bob, who is still living at home and determined to hold the family together.
While her parents worked on their relationship, Chelsey worked on her smile. Once the surgery took hold, Chelsey, in order to smile, would have to bite down on her back teeth. Though it at first requires conscious effort, her brain will adapt, making it more spontaneous. "Every morning," says Lori, "we'd go into the bathroom and we'd look in the mirror together. I'd say, 'Okay, bite.' " But Chelsey maintained her sense of humor. When a cashier at the supermarket asked if he could see Chelsey's new smile, she replied in a conspiratorial whisper worthy of a spy thriller, "Yes, I could show you, but then I would have to kill you." Seven weeks after the operation, Chelsey told her mother, "I think I felt something." Within a couple of days, says Lori, "it was very noticeable. There was movement in the corner of her mouth." By the 10th week, Chelsey had a bona fide half smile—and was ready to go ahead with the second surgery. "She was counting the days," says Lori. "When the time came, she walked right in there. She was so brave."
On April 23, Chelsey underwent the procedure for the right side of her face. This time the procedure took 12½ hours and again was followed by a difficult couple of days and then weeks of waiting. On the morning of June 19, Chelsey had been playing with 3-month-old Chaz Acheronti, one of the children Lori cares for in her daycare center, when she came running inside to find Lori. "Mom! Mom!" she called. "I just smiled at Chaz, and Chaz smiled back at me!" Says Lori: "If you smile at a baby and he smiles back, you know your smile looks like a real smile."
It didn't take long for her new look to make a difference. "She's the most popular girl in the school now," says her teacher Gina Burns, who admits that Chelsey's cachet comes partly because so many TV crews have been following her around. "If they ever have to pick someone to hand out paper, they pick Chelsey." Says kindergarten teacher Merlo: "Lately, I've noticed that Chelsey seems to have grown into herself."
It will take a while before her smile comes naturally and easily. "It's a little bit silly—maybe because I'm not used to it—and a little bit forced because she's still working hard on it," says Lori. Bob is delighted that his daughter is already making full use of her smile. "She manipulates me with it," he says. "But it makes me feel good."
Some of her friends are considerably more blasé about the hoopla surrounding their friend—even a bit puzzled by it. Back at the Brownie event, Chelsey is sharing a moment with her current best friend, Sarah Kavanagh, 8. "I saw her on television talking about her surgery," Sarah says between bites of ice cream and cake. "But she doesn't look any different to me now." And why does she like Chelsey so much? "Why?" Sarah asks with disdain. "Because she's my friend." Then the girls burst into giggles at the silliness of some grownups.
JOHN HANNAH in Palmdale
- John Hannah.
January 28, 2015
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