The new movie Wonder, based on the bestselling novel of the same name, follows the emotional ups and downs of the Pullman family as they send their 10-year-old son August off to fifth grade. It’s the first time “Auggie” (played by Jacob Tremblay) has been to school outside of the home, because he was born with Treacher Collins syndrome, a rare facial deformity that’s required dozens of surgeries during his first decade of life.
Because he looks different from most kids in middle school, Auggie and his parents are forced to deal with bullying and hurt feelings and to address misconceptions held by teachers and other students. But Auggie also makes friends and inspires those around him to look past his facial differences, see him for who he really is, and treat each other with kindness.
Richard Hopper, MD, surgical director of Seattle Children’s Craniofacial Center and chief of the division of plastic surgery, treats children with Treacher Collins syndrome, many of whom have also needed multiple operations and highly specialized care. (If you’re wondering how to pronounce the syndrome, Treacher rhymes with “teacher.”) Because it’s so rare, he says (and also so visible), it’s common for people to make assumptions about the disorder without knowing the facts. Here’s what he wants everyone to know about real-life children—and adults—with a condition like Auggie’s.
It’s rare, and usually random
Only about one in every 50,000 babies born in the United States will have Treacher Collins syndrome. The condition has been linked to certain gene mutations, and it can be passed from parent to child—but in about 60% of cases, the mutation arises spontaneously, meaning there is no family history and no known cause.
Treacher Collins syndrome is usually diagnosed shortly after birth, when it’s clear that a baby’s facial bones and tissues are underdeveloped. (Occasionally, it can be diagnosed during pregnancy via an ultrasound.) Once a child is diagnosed, he or she will likely need to be cared for by a team of specialists, including surgeons who specialize in facial deformities and their related health risks.
It affects structures like the jaw, nose, ears, and cheeks
Treacher Collins syndrome is a craniofacial deformity, meaning that the bones and tissues of the face do not develop as they should. Severity of the condition varies from child to child, says Dr. Hopper. “In some children, it’s barely noticeable, and they may need very little care,” he says, “while others can develop very serious complications and need multiple, intensive surgeries.”
Complications can include an underdeveloped lower jaw that can cause breathing difficulties, eyelids that don’t fully protect the eyes, a cleft palate that affects speech, and hearing problems due to ear abnormalities. Kids with Treacher Collins syndrome may need to have a hole cut into their windpipe with a breathing tube inserted (called a tracheostomy) and may need special hearing aids that transmit sound through bone tissue.
But it doesn’t alter intelligence
Perhaps the biggest misconception about people with Treacher Collins syndrome is that they’re mentally challenged or not as smart as other people. “Actually, they tend to be extremely normal children,” says Dr. Hopper. “Many of them even have above-average intelligence, and they tend to be sharp-witted, opinionated kids who just happen to have facial differences.”
As shown in the movie, however, growing up with a facial deformity can be tough—and it’s not uncommon for children and adults with Treacher Collins syndrome to feel isolated, frustrated, or depressed. That’s why it’s important patients and their families don’t just see doctors for their physical symptoms, says Dr. Hopper, but that they also talk to a social worker or therapist if their emotional health is suffering.
It can put kids at risk for serious complications
Without proper treatment, Treacher Collins syndrome can make it difficult for people to live a normal, healthy life. “Kids want to play sports and run around outside, but that can be challenging when you’re using a breathing tube or your eyes aren’t fully protected the way they should be,” says Dr. Hopper.
“These kids can’t even [travel] easily, because they need to stay near a hospital,” he adds. “They wouldn’t want to go hiking out in the woods and suddenly experience a life-threatening breathing problem.”
Surgery can help
Luckily, most of the physical problems caused by Treacher Collins syndrome can be addressed with surgery, and the vast majority of patients go on to live long and happy lives. Dr. Hopper has even developed a new procedure that “rotates the entire face” and lengthens bones in the jaw, allowing patients living with a tracheostomy to breathe on their own.
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And while that’s a yearlong, three-surgery process used only for extreme cases of Treacher Collins syndrome, there are also several less extensive, more routine procedures that can improve the life of someone with a milder case.
“If it’s causing a problem, whether it’s someone’s eyelids, or their hearing, or skin changes in their cheeks, there is a surgery that can address it,” says Dr. Hopper. “That’s why it’s particularly rewarding to treat these kids with Treacher Collins, because they have so much amazing potential that we can help them reach.”