Listen to Jacob Taylor’s accomplishments and you might feel like an under-achiever.
An Eagle Scout. A percussionist in the high school band. An actor who does live improv. A college student aiming for a career in cyber security.
And while juggling the academic and extracurricular pursuits typical of a high-achieving American teen, Jacob also made time for a lot of surgeries.
How many? At least 30 to 40 in his young life, said his mom, Sheri Taylor. If you count every procedure or test where he underwent anesthesia, the total reaches 64.
The most dramatic occurred this summer.
In an eight-hour operation performed by four surgeons at Spectrum Health Helen DeVos Children’s Hospital, the lower part of Jacob’s face was reconstructed. The surgeons implanted titanium jawbones on either side of his face, transforming his looks and his ability to move his mouth, to speak, eat and breathe.
It was a rare and exceptional procedure. Like Jacob.
A rocky start
Born 18 years ago to Sheri and Jim Taylor in a suburb west of Chicago, Jacob came into the world as a blond, blue-eyed boy who weighed 7 pounds, 13 ounces. Within minutes, his parents got their first inkling of the challenges ahead.
“They kind of wrapped him up and took him away,” Sheri said.
A couple of hours later, Jacob’s godmother, who is a nurse anesthetist, came into the room.
“I could tell she had been crying,” Sheri recalled. “She said, ‘I hope you don’t mind, but I called the church and they are going to send a priest over.’
“They were not sure he was going to make it.”
Jacob was born with arthrogryposis multiplex congenita, which causes contractures of multiple joints and reduced muscle tone. He had clubfoot, and his hands turned inward.
He also had an extremely small lower jaw. This forced his tongue to the back of his mouth, blocking the airway. Within a few days, Jacob received a tracheotomy and a feeding tube so he could breathe and eat.
As Jacob grew, he underwent surgeries on his feet and hands. He had tubes placed in his ears. And he had multiple operations on his lower jaw in an effort to extend it, though it remained small.
Through that time, his parents encouraged Jacob to be as independent as possible.
“We said if you physically can’t do (something), we will step in and help. But we won’t step in if you can do it yourself,” Sheri said.
He took the message to heart. In school, he used a motorized wheelchair to get around, but resisted other adaptive equipment, such as writing tools or a talking device.
“He said, ‘I will figure out how to say what I need to say. I can speak for myself,’” Sheri said. “He didn’t want the equipment if he didn’t absolutely have to have it.”
In high school, he pulled good grades and became involved in band and theater. In his senior year, he played in the ensemble in the school’s production of “The Hunchback of Notre Dame.” He traded his motorized chair for an old-fashioned wheelchair for the role.
“It was cool, but it wasn’t comfortable,” he said.
The most complex surgery
This summer, after graduating from high school, he went to Grand Rapids, Michigan, with his parents and 13-year-old brother, Joshua, for his most complex operation yet.
They have performed similar surgeries on other young people who, like Jacob, have hemifacial microsomia, a condition in which the lower half of the face does not fully develop. Typically, it affects just one side of the face. But for Jacob, both sides were affected.
Before Jacob’s operation, the surgeons had performed a bilateral jaw replacement on only one other patient.
“These patients are all unique,” Dr. Polley said.
Using CT scans and dental impressions, the surgeons performed a virtual operation on the computer to determine the length, angles and structure of Jacob’s new jaw.
TMJ Concepts, a company based in California, used the data to create the custom prosthetic titanium-and-silicone implants. They also printed a 3D model of his jaw to show the placement of the implants.
“It takes about three months for us to complete the workup,” Dr. Polley said. “There’s a lot of back and forth, a lot of minutia detailing how these things are going to fit.”
On a day in July 2018, four surgeons came together to perform the operation. With Dr. Polley and Dr. Girotto were a pediatric otolaryngologist, Joseph Taylor, MD, and a head and neck surgeon, Thomas O’Toole, MD.
During the complex, eight-hour operation, they implanted the jaw bones, moving the chin forward, and reworked the upper jaw, as well.
“We worked simultaneously, two of us on one side and two on the other,” Dr. Polley said.
After the procedure, Jacob’s jaws were wired shut for two weeks.
Loving the result
A month after the operation, Jacob arrived at the surgeons’ office for a follow-up visit, his face transformed by the new, larger jaw.
His reaction: “I love it.”
At the doctors’ request, he opened and closed his mouth. Already, he said, he could breathe more easily and sleep better.
He had started speech therapy sessions to relearn how to speak with his new jaw.
A foodie, he looked forward to the moment the doctors said he could expand his menu. For the moment, he was happy to hear he could eat a hamburger or a soft-crust pizza.
“Jacob, you look great,” Dr. Polley said. “You look dynamite.”
He encouraged him to continue to perform jaw exercises, opening and closing his mouth, for the next six months.
“If you do, it will pay off for the rest of your life,” he said.
Seeing Jacob’s progress is “extremely gratifying,” Dr. Polley said. And more progress will continue for the next year.
“His functional ability to speak and chew and use his head and neck motor skills will be greatly improved,” he said.
And as swelling continues to go down and scars fade, the esthetics will improve, as well. And that’s just as important for a young person interacting with the broader community through work and relationships, Dr. Polley explained.
“One of the main functions of the face is social,” he said.
The week after his visit with the doctors, Jacob began a new challenge: He moved into his dorm room at Illinois State University in Normal, Illinois, to begin his freshman year. He plans to work toward a career in cyber security.
Like many moms of first-year college students, Sheri found move-in day emotional. But she took heart in knowing all Jacob has accomplished and the health challenges he has overcome. Even as a child, “he would just handle it like a trouper,” she said.
“For him to be off on his own is exactly where he needs to be.”