As Peter Dankelson lay in his incubator, a fragile newborn with complex birth defects, doctors painted a grim picture of his future.
“They couldn’t tell us if he could hear, if he’d ever be able to talk. We had a doctor tell us he would never drink or swallow anything. We had a doctor tell us he would never be able to drive a car or go to college,” said Peter’s mother, Dede Dankelson.
How wrong they were.
Sixteen years later, Peter is a guitar-playing teen (with a penchant for heavy metal), a high school junior checking out college choices.
And he talks. Boy, does he talk.
In the last year, he spoke to 8,100 students across the country about kindness, inclusion and the facial differences that affect him and other kids. After his talks, kids line up to get their pictures taken with him.
“It’s the opposite of what your worst nightmare was,” Dede marveled. “He’s very confident in who he is.”
I actually have a chin now. I never knew how cool that was.
Peter recently added a new accomplishment to his resume. He underwent a groundbreaking surgery performed by John Polley, MD, and John Girotto, MD, pediatric craniofacial plastic surgeons at Spectrum Health Helen DeVos Children’s Hospital. The surgical team created a new jaw, brought his face into alignment and opened his airway.
The operation―Peter’s 29th surgery―wasn’t easy. For him or his surgeon.
“These cases (building a new jaw) are challenging anyway, but he was a super challenge,” Dr. Polley said.
And for Peter, the reconstruction required an eight-hour operation and a recovery that included two weeks with his jaws wired shut.
“It was worth it. It sucks, but it was worth it,” he said with a grin. “I actually have a chin now. I never knew how cool that was.”
Journey to a new jaw
Peter came into the world as a 30-week preemie with Goldenhar syndrome, a rare congenital defect that involves incomplete development of the face.
He had a cleft palate, a malformed jaw and missing left jaw bone, as well as a missing left ear and ear canal. He had only one kidney and he had dermoid cysts in his eyes. And he had extra space in the neck vertebrae.
“He couldn’t suck or swallow or breathe when he was born,” Dede said.
A few days after birth, a surgeon placed a tracheostomy in his neck to open his airway.
We always knew he would need another big jaw surgery. We never knew what it was going to be or when.
When he was 3, a plastic surgeon used a rib bone to create a temporary left jaw bone and lengthened the jaw. That enlarged his airway. When he was 4, his doctor could remove the tracheostomy tube.
But because the airway was still narrow and angled, the opening for the trach remained, covered with a bandage. A ventilator would be connected through the opening in future operations.
And Peter’s face remained asymmetrical. The upper and lower teeth did not meet. Unable to chew food, Peter lived on a liquid diet.
“At the time, it was his best option,” Dede said. “We always knew he would need another big jaw surgery. We never knew what it was going to be or when.”
As Peter grew, he defied those early grim predictions and matured into a brave, funny, kind and inspiring young man.
At age 11, the young adult novel “Wonder” appeared. The book by R.J. Palacio chronicles the story of a boy with a syndrome that affects the development of his face.
When a teacher asked for a young person to speak on the topic, Peter (and his mother) volunteered. That led to dozens of speaking engagements in classrooms and auditoriums nationwide. He also shares his story on his website, Pete’s Diary. For many students, Peter has become the face of facial differences.
“‘Wonder’ is the kind of book that kids remember their whole life,” Dede said. “If they meet someone like Peter, it really leaves an impression.”
He uses humor to connect with his audience. He shows off his prosthetic left ear, and he talks about his operations. He tells kids, “I’ve always been high maintenance and expensive.”
A new approach
As Peter grew up, new treatment methods developed, many of them led by Dr. Polley. He has pioneered techniques to reshape the facial structures of children born with birth defects.
When a doctor referred the Dankelsons to Dr. Polley, the family made the trip from their home in the Chicago area to Grand Rapids, Michigan, to explore their options.
Dr. Polley developed a plan to implant a titanium jaw bone and joint on the left side of Peter’s face―one custom-crafted to fit his anatomy.
Using CT scans, he performed a virtual surgery on the computer, to determine the dimensions of the jaw implant and where it would fit. He had performed the procedure before on other patients with hemifacial microsomia, a condition in which one side of the face is underdeveloped.
But in Peter’s case, he encountered a new wrinkle. There was not enough bone to anchor the implant on the side of his face. He considered whether to do a bone graft, but that would add a big stage to the procedure and delay the operation six months.
Peter―and his parents―hoped to have the surgery performed during his summer vacation, so he would have time to recover before starting classes.
Dr. Polley worked with TMJ Concepts, a California-based company, on a new approach. They developed a contoured jaw that could be attached from underneath.
“We had them kind of mock-test it,” Dr. Polley said. “Because it’s not just how it looks―it’s got to function right and it has to be stable enough to accept enough of a load and a force.”
It’s one thing to know a surgery is in the future. It’s another to sit in a doctor’s office the day before the operation and hear what will happen, step by step.
“Oh, man,” Peter said as Dr. Polley outlined the plan for the surgery. It would involve at least eight hours in the operating room.
The steps included:
- Remove the rib that was implanted years ago. The rib, which had continued to grow, had pushed up along the skull.
- Implant the new left jawbone and joint, securing it with eight screws.
- Remove a small chunk of bone from the skull for a bone graft for the right side of the lower jaw.
- Cut the right jaw and reposition it, using the bone graft, plates and screws, to match the new titanium jaw.
- Divide the upper jaw into three segments to bring it forward, and secure it with plates.
- Remove two wisdom teeth and two molars.
Dr. Polley spent 40 hours preparing for the operation, from the design of the implant to a review of the virtual surgery plan.
“I’m really excited for it,” he said.
“None of this existed when you were born,” Dede said to Peter. “You ready?”
Peter winced and laughed. “Sort of,” he said.
The surgery began early the next morning at Helen DeVos Children’s Hospital. Before he was wheeled into the operating room, Peter got hugs and kisses from his mom and dad, Darin, his grandmother, and his 12-year-old brother, Jacob.
His case was a unique case. I’m hoping he’ll go out and be an example of the potential these kids can have.
Peter’s operation required the efforts of five pediatric surgeons. In addition to Drs. Polley and Girotto, the team included neurosurgeon Casey Madura, MD, otolaryngologist Joseph Taylor, MD, and a plastic surgery resident.
Working with the template created in the computerized surgery, the surgeons moved through the steps to rework Peter’s upper and lower jaws and bring his face into alignment.
Plastic cutting guides aided the precision of their work. The small plastic pieces are like “little Legos that are contoured to match the right morphology of the bone, so you know you have them in the right spot,” Dr. Polley said. “We know exactly where to cut everything.”
The next morning, Peter lay in a hospital bed recovering from surgery. His jaws wired shut, he could not speak.
He greeted Dr. Polley with a fist bump.
For his parents, he held up two fingers repeatedly. Insistently. They didn’t understand. Finally, he held up two fingers, followed by a zero sign.
Dede and Darin looked at each other. He was wishing them a happy 20th anniversary. Neither had remembered this was the day.
Dede started to cry.
“That kind of captures who he is,” she said.
Two days later, Peter found another non-verbal way to express himself―playing electric guitar in the music therapy room. As another boy played drums and music therapist Bridget Sova shook a tambourine, Peter rocked out ACDC’s Highway to Hell.
It all clicks
Three weeks later, Peter returned to Dr. Polley’s office. The swelling was gone. Wires no longer held his jaws together. Thanks to his thick hair, the zigzag surgical scar across the top of his head could not be seen.
And for the first time in his life, Peter’s lower jaw lined up directly beneath the upper one.
“I can actually click my teeth together,” he said. “They are aligned. And I have a bigger airway, which is pretty important.”
“You look fantastic,” Dr. Polley said. He examined the jaw and watched Peter open and close his mouth.
“His bite is phenomenal,” he said. “I can’t believe how much room he has.”
He encouraged Peter to continue exercises to improve the opening a few more millimeters. As the nerves healed, he said Peter would continue to see improvements in speech and function for a year.
In terms of complexity, the surgical repair for Peter was “top of the list,” Dr. Polley said. “It’s a lot of moving parts.”
With an improved airway, Peter hopes he will eventually have the opening for the tracheostomy closed. And when that happens, he will finally get to take swimming lessons.
Dr. Polley praised Peter’s role as a public speaker, and his willingness to share his story to inspire kids to be kinder to others.
“He has turned this into a huge positive, not just for himself, but for his audience,” he said. “I’m hoping he’ll go out and be an example of the potential these kids can have.”