Brittany had never heard of Treacher Collins Syndrome. Brittany’s pregnancy with Michael was smooth and easy. Every night before bed, she’d sit down in an armchair, tuck her toddler Allison against the left side of her growing stomach and sing her to sleep. In the later months, she noticed that when she sang, the baby would stir, kicking softly. For nine months, she attended frequent checkups and her share of sonograms. She’d decided to wait to find out its gender. By all accounts, she was expecting a healthy, happy baby.
She had what she calls a “hippie granola birth,” a water birth at a birthing center attended by a midwife without the assistance of an epidural.
She looked up to finally find out his gender and was so excited, she yelled, “He has balls!” The doula wiped off his face. When they handed him to Brittany, she counted his fingers and toes and cradled him against her chest.
Treacher Collins Syndrome
Then, Michael’s father asked what was wrong with his ear.
“Michael had one side of his face resting on my chest,” Brittany recalls. Her mother suggested his ear was just stuck and rubbed it, expecting it to pop up. It didn’t. Brittany began to see some concern in the eyes of the nurses, but her mother was very cool.
“Okay, he doesn’t have an ear,” she said.
“He’s got a funny little look,” the midwife noted.
Brittany turned him over. Michael didn’t have either ear. In fact, he looked a little bit different. Even closed, his eyes drooped dramatically and his little nose protruded. Brittany’s first thought was that he must have a genetic disorder of some kind. Her second was that it might kill him.
“I freaked out,” she recalls. “I thought he might die. Syndrome to me meant lifespan.”
It occurred to her that perhaps he was deaf and had never heard her singing. Maybe he never would.
Her mother quietly googled Michael’s features and immediately, Treacher Collins Syndrome came up.
“Look,” she said and showed Brittany a picture of a child with Treacher Collins. Brittany compared, seeing the same features in her son. “The best part is, he’ll grow up to be a doctor or lawyer or whatever he wants to be. His mental capacity and lifespan won’t be affected.”
“That’s all I cared about. That he lives,” Brittany says today, almost two years later.
Treacher Collins is a rare genetic disorder that affects the development of bones and other facial tissues. Some individuals are so minutely affected they don’t even know they have it. For others it can be very noticable. Key signs include downward-slanting eyes, absent or little ears, underdeveloped facial bones, particularly the cheekbones, and a very small jaw and chin. People with Treacher Collins syndrome usually have normal intelligence.
Because Treacher Collins is rare and runs in families, doctors don’t typically test babies for it. Sometimes that leads to traumatic reactions. Jono Lancaster, a famous young adult with Treacher Collins who has dedicated his life advocating for people with craniofacial disorders, was given up at birth. His birth certificate reads that his biological mother was “horrified by his appearance” and expressed no maternal bond at all.
Both of Michael’s grandmothers were adopted, so Brittany doesn’t know which side of the family carries the Treacher Collins gene. But she doesn’t really care.
“Michael is so average,” Brittany says. She lives in Plano with Michael and Allison. “He’s extraordinary, don’t get me wrong, but once you see him, you see he’s a normal little two-year-old. He’s a lot more laidback than his big sister which is really nice.”
Michael likes playing with toy trains and cars, and following Allison around to do whatever she does. He especially loves music. When they visited Christmas on the Square in Frisco, he went right up to one of the speakers to lay his cheek directly against it so he could feel the music.
“Michael doesn’t have ears, so he hears a little differently than most people,” Brittany explains. “It’s better for him if he can feel it. But when his hearing aids work, he hears better than I do.”
Even when the kids aren’t in the room, highchairs and toys nod to their presence. The main room is a frequent play area.
Michael’s nurse brings him in. He’s sleepy, unhappy to be woken up from his nap. He’s a little small. He has a long beaky nose and sleepy brown eyes. Instead of ears, he has two curled seashells. A tracheostomy (trach) tube peeks out over his collar. He pouts and buries his face in his mother’s neck.
Michael has some medical problems. His nose canal is so small that as a baby he couldn’t eat and breathe at the same time. When he was born, he had to stay in the hospital for a month and a half. The trach helps him and soon, Brittany hopes he won’t need it anymore.
“Having a kid with a trach is a lot of extra work. I wouldn’t be able to do this as a single mom unless I had nurses,” Brittany says.
Her family was up to the challenge. “My mom was a special needs substitute teacher so she has experience. She was like ‘cool, we’ve got a special one,’” Brittany says.
In a rare twist of fate, Brittany discovered that Dallas is home to the Children’s Craniofacial Association (CCA), a national nonprofit that addresses “the medical, financial, psychosocial, emotional, and educational concerns relating to craniofacial conditions.”
Michael’s doctor is Dr. Jeffrey Fearon, a world-famous surgeon who specializes in kids like Michael. Dr. Fearon could have drilled into his nose canal to widen it but that would have left him with scar tissue, and as he continued to grow, he would have to undergo that same surgery again and again. He and Brittany both believe it’s better to hold off on operating until he stops growing.
“Some of these kids get operated on upwards of 50 times,” Brittany explains. Michael has had four operations. One fixed his cleft palate when he was born and the others have been to insert and maintain his trach and feeding tube.
Many of the operations Treacher Collins kids recieve are purely cosmetic. As long as he’s healthy, Brittany refuses to alter Michael’s appearance in any way.
“When he’s old enough to decide, it’ll be his decision. But I want to build him so full of confidence that he doesn’t care if he doesn’t have ears. When he’s thirteen, my dream is for him to not want cosmetic surgery. I know, 13 is a really hard age. So that may not happen and he may want surgery. But, hey, that’s my goal,” she says. She glances around their little home, the toys, the tree, the family pictures. “There’s a lot of love here,” she adds softly.
When she first brought Michael home, Brittany worried about what to say to people who stared or pointed at him, unsure how to protect him. She recalls a birthday party where a kid loudly asked, “What’s wrong with his face?”
Brittany forced a smile and explained that there was nothing wrong with him because God had made him that way, adding, “But isn’t he cute?”
The kid scrunched up his nose. “No. He’s not cute.”
Michael’s big sister, Allison, was barely two years old. But she vaulted up onto her chair and got in his face. “He is cute!” She shouted. “He is cute!”
“She’s something else,” Brittany chuckles. “I didn’t understand why she is the way she is until Michael was born. She’s supposed to be sassy and spunky and outlandish and beautiful because she’s an advocate. Allison is his protector. It all lines up.”
Often, however, kids react better to Michael than adults do. Kids stare and then come over to ask about him, while often adults just look away, afraid to stare.
“Kids come up and I say, ‘This is Michael, he’s two. He doesn’t have ears and this is his hearing aid. He can hear everything you say, isn’t that great?’ If you put a positive spin on it, kids are just like, ‘Yeah!’ And you don’t have to say anything else,” she explains.
Locally, Brittany and her family became advocates for children with craniofacial disorders almost overnight when they hosted a red carpet event for the movie Wonder, about a child with Treacher Collins and his family. Nearly 500 people attended the screening at a Cinemark theatre in Dallas.
“That’s basically a movie about my son,” Brittany says. “I cried all the way through. We stereotype. It’s human nature. Michael looks different. If you look away from someone and choose not to talk to them because of the way they look, you’re hurting someone. Understand that he’s a regular kid. And he can hear you.”
Brittany and her kids have received letters from people across the world, all part of a network of Treacher Collins individuals. News crews from all over DFW have planted themselves in their living room to watch Michael tossing a ball around and eating snacks. He’s too young to understand how much he’s loved.
Lately Michael and Brittany have been traveling to schools all across Collin County, to advocate for the Choose Kind campaign through the Children’s Craniofacial Association.
“Michael has changed so many lives,” Brittany says. “I’m inspired by him but this is everyday life. A single mom, two kids—this is just life.”
Originally published in Plano Profile’s February 2018 issue.