He hooks an index finger into each side of his mouth as well as pulls gently upward. He puckers his face into a kiss, then opens wide into an O, trying to limber up his facial muscles. He practices both the Mona Lisa — slight, closed-lip — as well as a wide, toothy smile.
At least, he’s supposed to do his exercises every day. Being 13, he sometimes forgets, though he understands their importance.
“I need to stretch my cheeks,” he says. He exercises so much of which his jaw sometimes hurts.
Kevin was born in fresh Jersey using a rare malignant vascular tumor, a kaposiform haemangioendothelioma, covering the left side of his face, squeezing shut his left eye as well as pushing his nose to the right.
Immediately after his birth, doctors whisked him away to another hospital in another state. His mother didn’t see him again until he was eight days old.
The doctor told Kevin’s parents of which the chance of him surviving was slim.
however survive he did. However, the large tumor as well as the damage coming from its treatment prevented him coming from being able to do one of the most fundamental things humans do.
Most babies are born immediately able to communicate in one way: by crying.
The second signal babies send out is usually a smile. Newborns can smile spontaneously, as a reflex. of which is usually sometimes misinterpreted by fresh parents as a reaction to their presence, a reward for their intense concern as well as sleepless efforts.
of which fresh parents sometimes optimistically interpret the first reflex smiles as meaning something more underscores the duality of smiling: there is usually the physical act as well as then the interpretation society gives to the item.
On a physical level, a smile is usually clear enough. There are 17 pairs of muscles controlling expression inside the human face, plus a singular muscle, the orbicularis oris, a ring of which goes entirely around the mouth.
When the brain either reacts to a stimulus spontaneously or decides to form an expression intentionally, a message is usually sent out over the sixth as well as seventh cranial nerves. These branch across each side of the face coming from the eyebrows to the chin, connecting to a combination of muscles controlling the lips, nose, eyes as well as forehead.
The basic upward curving smile is usually achieved primarily by two pairs of zygomaticus muscles. These connect the corners of the mouth to the temples, tugging lips upward — often accompanied by the levator labii superioris, raising the upper lip, as well as various other muscles of the face.
the item is usually when we leave the realm of physiognomy, however, of which the smile becomes enigmatic. of which contraction of various facial muscles resonates across the entire arc of human history, coming from the grinning Greek kouros sculptures of 2,500 years ago right up to emoji, those little images of which pepper our online communications.
Unable to smile
Kevin did not smile on schedule. At all 5 weeks old he was already a week into chemotherapy with vincristine, an anticancer drug so powerful the item can cause bone pain as well as skin rashes.
Whether stunted due to the tumor or killed by the chemo, Kevin’s seventh cranial nerve withered. of which nerve originates at the brainstem then branches out across the face. the item is usually susceptible not only to tumors however also to rare conditions such as Moebius syndrome, a congenital facial paralysis caused by missing or stunted cranial nerves. You can’t smile, frown, or move your eyes coming from side to side.
“You essentially have a mask on your face,” says Roland Bienvenu, a Texan with Moebius syndrome.
Without being able to smile, others “can get the incorrect impression of you,” says Bienvenu. “You can almost read their thoughts. They wonder, ‘is usually something wrong with him? Has he had an accident?’ They question your intellectual ability, think maybe he’s got some intellectual disability since he’s got of which blank look on his face.”
The challenges stemming coming from lack of a smile are frequently compounded. Once Kevin was able to eat food, go to school as well as enjoy usual childhood pastimes — he became passionate about soccer — he still felt the tremors of having a half-smile.
“I couldn’t smile on my left, I only smiled on my right,” says Kevin. “My smile was weird… people kept asking what happened to me, why I’m like of which. I keep telling them I was like of which when I was born.”
While losing a smile is usually a serious blow at any age, the item can have a particular impact on younger people, who are forming the bonds of which will carry them through the rest of their lives.
Or trying to.
“the item’s a huge problem,” says Tami Konieczny, supervisor of occupational therapy at the Children’s Hospital of Philadelphia (CHoP). “If someone can’t read your facial expressions, then the item’s difficult to be socially accepted. the item’s hugely devastating for kids. I had kids photoshopping their pictures. They are taking mirror images of their not bad side as well as copying the item, photoshopping their own pictures before posting them to social media.”
Reanimating the face
Photoshopping might work on Facebook. however fixing a smile bisected by nerve damage as well as subsequent muscle loss is usually far more complicated. Sometimes, the item requires multi-stage plastic surgery spread out over a year or more.
There are two major procedures available for facial reanimation, according to Phuong Nguyen, a plastic as well as reconstructive surgeon at CHoP.
“Kevin had the most commonly done one, a classic two-stage cross-face nerve graft followed by a free gracilis muscle transfer,” says Nguyen.
“My preference is usually to do the item when kids are all 5 years of age,” says facial reanimation pioneer Ronald Zuker, a Canadian plastic as well as reconstructive surgeon. “At the time, if I can restore a smile for them, they can go to primary school, meet kids on the playground as well as in class. They have their smiles as well as are well-equipped to handle of which situation.”
Still, some parents prefer to wait until their children can participate inside the decision.
“If families want to wait, of which’s perfectly fine,” says Zuker. “Sometimes when a kid is usually nine or ten they look inside the mirror as well as say, ‘You know, I truly want of which surgery.’ of which’s the time to do the item.”
Which is usually what happened with Kevin. He was doing well, “even with of which scar on his face, has always been well-known at school,” says his mother, Silvia Portillo, in Spanish, speaking through a translator.
however there were kids of which made fun of him, she says. One day when he was about nine, he was sad. “He said, ‘Some kids, they’re not my friends. They laugh at me because I look funny.’ the item was truly hard for us as parents.”
At age ten, Kevin told his parents of which he wanted to do what most people do without giving the item a second thought. He knew the item would likely be a long, painful, difficult procedure, however the item was one he wanted to undergo.
In October 2015, Nguyen cranked up some rock music inside the operating room at CHoP.
He began work by removing a section of sural nerve coming from Kevin’s right ankle as well as attaching the item to the right side of his face, running the item underneath his upper lip, to the paralysed left.
“We bring the item across, parking the item, waiting for nerves to regrow coming from the right side to the left,” Nguyen says.
of which growth took almost a year. The nerve fibers advanced about a millimeter a day (about 24,000 times slower than a snail).
During of which time, doctors would likely periodically tap areas of Kevin’s cheek, to see if the nerve was taking. “When the item tingles, you know the nerve is usually growing,” says Nguyen.
Once Nguyen was certain the nerve was functioning, the item was time for the second stage of the surgery.
One morning in August 2016, he took a marker as well as wrote a “P” on Kevin’s left temple as well as an “NP” on his right, for “paralyzed” as well as “not paralyzed”, a common surgical precaution against the risk of cutting into the wrong side of a patient.
“You want to make the item idiot-proof” says Nguyen.
He also drew a pair of parallel lines, marking the location of a prime artery, as well as an arrow: the vector Kevin’s smile would likely take.
The surgeon made an incision coming from the temporal hair line, in front of Kevin’s left ear, then pivoting back under as well as behind the item, extending into his neck — the standard location for hiding plastic surgery scars. The skin on a face peels back easily. He attached three sutures to the inside corner of Kevin’s mouth as well as gently pulled, to gauge exactly where the muscle should be attached.
The moment Nguyen put strain on the triple surgical thread was once Kevin Portillo ever smiled on the left side of his face.
of which done, Nguyen removed a segment of gracilis muscle coming from the inside of Kevin’s left thigh. The muscle was secured in place by a customized splint of which hooked into Kevin’s mouth as well as was sewn to the side of his head to keep the relocated muscle coming from pulling out before the item healed.
The section was taken coming from Kevin’s thigh because the item’s rich in muscles. “There are so many muscles of which do the same function… you don’t miss of which,” Nguyen says.
Well… most wouldn’t miss the item. Kevin, a diehard soccer fan, did. “When the surgery came I couldn’t play,” he says. “I didn’t know the item would likely take of which long. I thought the item would likely take a couple days as well as I would likely be back.”
Just how long was he sidelined?
“the item was more than two weeks,” he says, sorrowfully.
“He wasn’t concerned with how serious the surgery was,” his mother says, laughing. “He was more concerned with not being able to play soccer.”
Over the next year, Kevin began to get motion on the left side of his mouth.
“the item’s truly kind of a magical thing,” says Nguyen. “We do of which procedure, numerous hours as well as effort, using not a tiny amount of resources. We don’t know if the item works or not.
“I saw him post-operatively within the first couple of weeks, he looked like he had of which big bulgy thing in his cheek. Nothing was moving. All of a sudden, he was smiling. the item was a truly incredible moment.”
Learning to smile
Well, the item’s magical, however the item’s also hard work.
Kevin begins his occupational therapy session by holding a plastic fork in his mouth as well as showing of which he can move the item up as well as down.
“Try to purse your lips together to make the item stand up,” says Anne-Ashley Field, his therapist at CHoP. “We’ve got the item pretty solid inside the middle. Try to work the item over to the weaker side. Nice try… as well as of which’s harder.”
Kevin puts on latex gloves as well as pulls at the inside of his cheek.
“You’re going to do your stretch on the inside,” says Field. “Do you feel like the item’s getting looser than the item was?”
“Mmm-hmmm,” Kevin agrees, gloved fingers in mouth.
She takes some photos. There is usually a lot of photography in facial therapy, to track progress.
Physical rehabilitation is usually the part of the surgical process of which often gets overlooked, however the item can make the difference between success as well as failure.
“the item’s huge, particularly with facial palsy,” says Nguyen. “You can do technically very sound surgery on two completely different patients as well as have two completely different outcomes based on how involved they are with their own therapy.”
How does Kevin feel about being able to fully smile after a lifetime of not being able to?
“I’ve been getting better on how I react. I do the item automatically,” says Kevin. “Sometimes when somebody says a joke, the item actually feels great currently. Before the item felt weird to not smile. Smiling with both sides of my mouth at same time, I feel I’m one of the various other people who smiles right.”
His mother remembers the moment she noticed.
“We were at the table, we were eating,” says Silvia. “as well as then we said, ‘Kevin, are you moving there?’ He started off moving. Not the way he was doing today; little movements.”
“We were eating,” he says. “I think she said something funny, as well as I just smiled.”
as well as how does smiling affect his life?
“Before, I was actually shy,” he says. “Right currently, I’m less shy, more active.”
“I used to have trouble expressing my emotions. currently people know if I’m smiling or laughing. When I laughed, before, I laughed weird. as well as right currently, they know, bit by bit, of which I was trying to smile, I was expressing my laughter as well as my smile. When I play soccer, as well as score a goal, I’m happy. I’m smiling, to tell everybody I scored.”
of which is usually an edited extract coming from an article first published by Wellcome on Mosaic. the item is usually republished here under a Creative Commons license.