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Smiling inside, hoping you’ll see

Times Staff Writer

As the deadline approached for her science project last spring, Culver City fifth-grader Kiana Deane chose a familiar subject: herself.

Since birth, she had been afflicted with an uncommon form of paralysis called Bell’s palsy that left her unable to smile. As far back as she could remember, children would stare at the empty look on her face and ask: What’s wrong with you?

She decorated her science poster with photographs of her own face, staring outward with that blank, emotionless look of fashion models whom she admired because their expressions were like her own.

Her project was also a plea for her classmates to look behind her face to the girl inside.

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“I get teased, questioned and misjudged because I am unable to smile,” the 11-year-old wrote. “Well, maybe I don’t have the muscles or nerves to smile, but I have kindness, respect and I am going to live a successful life.”

In the human face’s infinite patterns of expression, a smile springs from one of the most basic motivations -- the desire to connect with others.

Next to blinking, smiling is the most common facial expression, performed almost reflexively to convey a range of feelings: pleasure, embarrassment, friendliness.

To have no smile is a rare burden. Some say it is like being trapped behind a mask.

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Bell’s palsy is the default diagnosis when the exact cause of facial nerve damage isn’t known. In the overwhelming majority of 40,000 cases reported in the U.S. each year, the paralysis is temporary and resolves in a matter of months without treatment. Most cases involve older adults.

For those who fail to recover, the condition can be devastating. Karen Schmidt, a biological anthropologist at the University of Pittsburgh who studies emotions, has worked with teachers and lawyers who have quit their jobs because they believe they can no longer be effective without the use of their faces.

What these patients miss most is their ability to smile, Schmidt said.

Chiara Walters, 34, said people stopped smiling at her because she could not smile back, and the children in her Louisville, Ky., classroom thought she was mocking them with the pouty look her paralysis brought.

Debbie Lawlor, 54, of Fairfield, Ohio, who came down with Bell’s palsy 14 years ago, said she yearned to let her grandchildren know that she was happy and not making faces at them.

For a child, the loss is immeasurable.

“A smile is, like, everything,” Kiana said.

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Her inability to smile showed almost immediately after birth. Her biological mother was a drug abuser, and days after she was born, Kiana was whisked into foster care. Kiana dribbled a lot when she took a bottle because she couldn’t properly close her lips.

Social workers noted the paralysis on one side of her face and speculated a facial nerve was damaged when Kiana’s head emerged from the birth canal.

An arched eyebrow, a friendly wink, a tearful frown all need a functioning seventh cranial nerve, one of 13 specialized nerves that emerge directly from the brain to control the muscles of facial expression.

When Kiana tried to smile, the result was a lopsided expression that looked more like a grimace. Her foster mother, Faith Talsma, would take her to Sears for baby portraits, instructing the photographer to shoot Kiana’s good side and to refrain from making her smile.

At age 3, Kiana was adopted by Robin Deane, a choreographer at West Angeles Church of God in Christ, who took the toddler to physical therapy. Kiana received electric shocks and, every night, Deane massaged Kiana’s face to stimulate the girl’s paralyzed muscles.

She began drumming into Kiana the idea that she should see herself as a regular, pretty girl. Whenever a new issue of Cosmo Girl or Seventeen arrived, Kiana immediately looked for the pictures of emotionless models so she could cut them out for her scrapbook.

“It makes her feel normal when she sees these pictures,” Deane said.

Seizing on Kiana’s interest in models, Deane bought a collection of inexpensive colorful hats and sunglasses that Kiana could use when she rehearsed her poses. Once, Deane conducted a mock fashion shoot with a disposable camera, then compiled the photos into an album that Kiana calls her portfolio.

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Adjusting her floppy pink hat, Kiana recently demonstrated a pose in her bathroom mirror, tilting her head just so.

“You don’t need to smile to be beautiful,” Kiana said.

Deane began to pick up hints of the emotions that were missing from Kiana’s face. If she was slouchy or too quiet, Deane guessed something was bothering her. A grimace, the closest Kiana came to a smile, meant happiness.

For others, it was more difficult. Teacher Jeffrey Snyder said he would ask Kiana questions to draw her out because he couldn’t tell by looking at her whether she understood her lessons or was perplexed by them. Classmates said they thought she was sad when she wasn’t.

“I would ask her, ‘Kiana, are you OK?’ ” said Kamaria Jordan, 9, a friend from church.

What bothered Kiana were the taunts from classmates. Some called her ugly and others called her “Twitcher” because of an eye spasm related to her paralysis.

She tried to ignore her tormentors and hid the spasms behind sunglasses. But sometimes it was all too much, and she pretended to be sick so she could take refuge in the nurse’s office. She hated being in school when they handed out class pictures. Some kids blacked out her face, and when she got home, she tore hers up.

Kiana decided to bring her condition into the open with her science project.

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Researchers have been entranced by the science of smiling. A smile does more than transmit information; it trips pleasure circuits in the brains of others.

One study published last month in the journal Pediatrics found that an infant’s smile sets off an explosion of brain chemicals in the mother. The reaction motivates the mother to do things that will make the baby smile, researchers say, setting in motion a feedback cycle that produces ever-tightening emotional bonds.

Evolutionary biologists believe the smile is hard-wired into the human psyche. They trace its origins to the fear grimace in monkeys, a submissive gesture in which the teeth are bared but the corners of the mouth are upturned.

Kiana’s poster was one part scientific explanation of muscles and nerves, and one part manifesto. She explained why she couldn’t smile and argued that she shouldn’t be shunned for it.

“I still like me because a smile isn’t everything,” Kiana wrote. “I see people smiling but their smile is not real. It’s a fake smile. They smile on their face and hurt sooo bad on the inside. I see people smiling but they are hiding something bad behind that smile.”

As Kiana researched her condition, Deane continued her search for treatments. Through the Internet, she learned about a rare surgical procedure developed to give at least some control over the face.

Kiana included the information on her poster in a postscript called “Surgery,” which explained what doctors could do and, more important, what she would do if she had such an operation.

“I will buy a camera with my allowance,” she wrote on the poster. “I will look in the mirror and say, ‘Say cheese!’ I will smile so hard that my cheeks will stretch to my ears.”

As students and parents crowded around her poster at Farragut Elementary School’s science fair in April, Kiana could see she was getting through to people.

“Absolutely courageous,” said one of the mothers, Lisa Maggio, whose sister had a tumor removed from her jaw at age 13. She went through a lot of teasing, Maggio said.

A first-grader made faces in the round pink mirror attached to Kiana’s poster board.

“God made her special too,” explained the girl’s mother, Hanan Coury. The girl was born with her stomach in her chest and is fed through a gastric tube.

“It’s so impressive,” Coury said. “Tweens are so concerned about their body and appearance.”

Two weeks after the science fair, Deane took Kiana to Childrens Hospital Los Angeles to see plastic surgeon Dr. Andre Panossian, a specialist in “smile surgery” procedures.

Kiana was a good candidate, he said, but warned mother and daughter not to expect too much. The surgeries would not restore other facial expressions and would have no effect on Kiana’s eye spasms.

The procedure consisted of two eight-hour operations, conducted nine months apart. The functioning nerve from her left cheek would be routed like an extension cord across the upper lip to her paralyzed right side. A nerve sheath transplanted from her leg would function as a tunnel for this nerve to travel through.

Next, a muscle from Kiana’s thigh would be transplanted into her paralyzed cheek and connected to the nerve.

Panossian discussed other young patients who displayed small but unmistakable smiles. Kiana’s smile would never be perfect, he cautioned.

Deane was torn. The surgery was long, uncertain and painful. Anesthetics carried risks. Faith Talsma’s husband, Ronald, whom Kiana called Grandpa, was against the surgery. Kiana was pretty the way she was, he said.

Deane tried to look beyond the childhood slights Kiana now suffered into her daughter’s future. She wondered whether her facial expressions would hurt her chances of finding a job or a spouse. “The first thing people notice about you is your face,” she reasoned.

There was no doubt what Kiana wanted. The next day, Kiana drew doodles of smiles all over the papers in her Hello Kitty binder. Not long after that, Deane glimpsed her posing in front of the bathroom mirror, only this time, Kiana’s hand was shoving her paralyzed cheek upward, stretching her expression into something of a grin.

Is that how you want to look? Deane asked. Kiana nodded.

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Before dawn on Aug. 15, Deane and Kiana arrived at Childrens Hospital. Kiana’s head was covered in finger curls that took Deane two days to style.

Kiana was holding a paperback with a smiling Miley Cyrus on the cover. She had been carrying the book everywhere for days. Deane said it was Kiana’s security blanket, comforting her the way a teddy bear would for other children.

Kiana changed into hospital pajamas, and after some routine blood work was directed to a waiting area for surgical patients.

Before climbing onto a gurney, Kiana joined hands with her mother and prayed that the doctors would make no mistakes. She lay in bed flipping TV stations with a remote control.

“Just like a hotel,” Deane said. She slipped off her daughter’s sneakers and tickled her feet. Kiana burst into giggles, instinctively covering her mouth with her bedsheet.

At 7:30 a.m., an attendant wheeled Kiana to surgery. Deane leaned over and gave Kiana a kiss. Deane retreated to the waiting room, interrupting her nervous vigil to buy flowers and some magazines for Kiana.

Nearly eight hours later, Deane was summoned to the surgical floor and directed into a small conference room.

The surgery had gone well. It would leave a faint scar in front of Kiana’s left ear, but that would be hidden by her hair.

As she waited for Kiana to emerge from surgery, Deane looked through the doorway into the long hallway and, unexpectedly, caught of glimpse of Kiana being wheeled into the recovery room.

Deane smiled, relieved that this first part of what would be a long ordeal was over.

Kiana, unconscious from the anesthetic, lay peacefully on the gurney, her face framed in a mop of soft curls.

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denise.gellene@latimes.com


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