Peter Dankelson was a delicate child who was born with a complicated set of birth abnormalities. While he was lying in his incubator, the physicians presented a bleak picture of his future.
“They were unable to tell us whether or not he could hear or whether or not he would ever be able to speak. A physician assured us that he would never drink anything or swallow anything again. “We had a doctor tell us that he would never be able to drive a car or go to college,” said Dede Danielson, Peter’s mother. “We were told that he would never be able to do either of those things.”
What an error of judgment they had.
In the present day, Peter is now a junior in high school, plays the guitar, and enjoys listening to heavy metal. He is also considering his options for further education.
And he communicates. Boy, does he talk?
Over the course of the past year, he gave presentations to 8,100 students all over the country on the topics of kindness, inclusion, and the facial differences that he and other children face. After each of his speeches, there is a queue of children waiting to have their photographs taken with him.
“It’s the exact opposite of what your worst nightmare was,” Dede said in amazement. “He has a very strong sense of self-assurance.”
Peter has just lately included an additional achievement on his résumé. Surgery that was conducted on him at Spectrum Health Helen DeVos Children’s Hospital by pediatric craniofacial plastic surgeons John Polley, MD, and John Girotto, MD, was considered to be a major medical breakthrough. His face was realigned, a new jaw was constructed for him, and his airway was opened during the surgical procedure.
The procedure, which was Peter’s 29th surgery, was not a simple one. or his surgeon, if you choose.
“These cases (building a new jaw) are challenging anyway, but he was a super challenge,” said Dr. Polley. “He was a super challenge.”
And in order to reconstruct Peter’s jaw, an operation lasting eight hours and a recovery period that included having his jaws wired shut for two weeks were both necessary.
“It was well worth the effort. He added with a smile, “It’s a pain, but it was definitely worth it.” “I now have a chin in all actuality. I had no idea how great that was until now.”
Goldenhar syndrome is a rare congenital abnormality that includes insufficient development of the face. Peter was born prematurely at 30 weeks, and he was diagnosed with this condition shortly after his birth.
He was born with a cleft palate, a deformed jaw, and the left jaw bone was missing. In addition, his left ear and ear canal were not there. He only had one kidney, and both of his eyes were affected by dermoid cysts. In addition to this, the vertebrae in his neck were much more spacious.
When he was first born, he had difficulty sucking, swallowing, and breathing, as Dede said.
A tracheostomy was created in his neck by a surgeon a few days after he was born in order to access his airway.
But even as they eagerly anticipated the birth of their first child, additional challenges emerged. Their child developed hydrocephalus, which is an accumulation of fluid in the head, as seen by ultrasound imaging. Due to the large amount of fluid present, the doctors said that they were unable to locate a brain.
They did not anticipate that their child would survive. If he did so, they predicted that he would only have a year’s chance of survival at most.
During the last month of her pregnancy, Deb wept each and every day. She and Mike told just a select few people, mostly close relatives, and friends, the devastating news.
They were holding out hope that modern medicine might provide some solutions for their youngster. And they said their prayers.
“Our faith was what we leaned on,” recalls Deb. “That’s what got us through,” the speaker said.
They came to the conclusion that the gift of each day should be the primary emphasis. Mike encapsulated their mindset when he said, “Whether we have him for ten days, one year, or the rest of our lives, we will cherish every moment we have with him.” It all depends on what the good Lord decides to give us.”
When Jonathan was delivered by cesarean section on June 12, 1994, the operating room was bustling with doctors and other medical staff members. He tipped the scales at 8 pounds and 1 ounce. He had a full head of hair that was dark in color. The good news for his parents was that he was able to breathe.
Deb was allowed to hold him for a little period of time.
“It was just fantastic. “It was completely unbelievable,” she explains. “I was speechless when I realized that he had really survived and that he was breathing on his own. I was filled with gratitude that he was still with us.
Four days later, Jonathan was taken into the operating room for his first procedure, which consisted of a neurosurgeon inserting a shunt into his brain. After the removal of the extra fluid, his brain was finally able to be seen on the MRI and CT images. The Kosters were quite interested to know what the physicians thought that signified. What new skills and abilities might their kid be able to acquire? Nobody was able to provide them with any answers.
“A healthy spirit”
From the very beginning, Jonathan required more assistance. His parents had to use a tube to feed him for the first year of his life since he was born with a cleft palate.
At 5 months old, he began receiving services for children with special needs. He attained typical childhood milestones more later than most children do. Despite this, new landmarks continued to be achieved.
“We couldn’t believe it,” Deb recalls. “He would straighten his back. He would hold his ground. It didn’t matter to me that he was 3 years old and still standing, even if he wasn’t walking yet. After that, the next year, he started walking. That was absolutely enormous.
A stroke that occurred while he was still in the womb is what the doctors think caused the birth abnormalities on his face.
Jonathan had surgery once or twice a year, most of which were performed on his face, and the frequency of these procedures increased with time. His cleft palate was fixed by a pediatric craniofacial surgeon at Helen DeVos Children’s Hospital named Robert Mann, MD. His right jaw was enhanced by utilizing cartilage taken from his ribs, and an ear was made for him so that he could wear glasses without discomfort.
Everywhere Jonathan went, he was able to make new friends. In the classroom. At camp. And in particular at the Christian Reformed Church on Twelfth Avenue.
During his time at the church, Deb noticed a significant change in her husband’s character. “He’s everybody’s friend. And the church just encircled him at every turn of the path.
When Jonathan turned 11, the organist at the church started teaching him how to play the piano. And from it, a musician emerged. Because he practices every day, Jonathan is now able to play a comprehensive repertoire of hymns on both the piano and the organ.
When they are at home, Jonathan assists his father with the yard work.
He states, “Mowing the lawn is a fun activity for me.”
He gives his buddies rides on an all-terrain vehicle as his dad watches over them as they go down a trail that has been cut through the dense grass.
As he speeds around a bend, he exclaims, “This is where it starts getting fun!”
Jonathan is committed to furthering his education and is now enrolled in the Community-Based Instruction Program offered at the Ottawa Area Center. As part of his educational experience, he volunteers at Sunset Manor, which is located in Georgetown Township and provides assisted living. He teaches an exercise class once every seven days. After that, he takes a seat at the piano and plays psalms and hymns.
On a recent morning, he informs his audience, “This is my favorite.” “This is my favorite,” he says. “So, I guess we’re going to sing all of the verses.”
He then breaks into an animated performance of “How Great Thou Art.”
Mike proclaims, “He really does have a good heart.” It brings him great joy to assist others.
As Deb looks forward, she notices that Jonathan is “in a performing mode.” The possibility of finding paid job thanks to voluntary labor is always there. And this is one of the reasons why she is considering getting a prosthetic jaw implant.
“I’m thinking down the road, if he gets to perform in different nursing homes, it’s wonderful that he’s got a straight face,” she adds. “I’m thinking it’s wonderful that he’s got a straight face.”
A solution based on computerization.
Surgeons took CT scans of Jonathan’s face to construct the implant, and then they performed a simulated operation on the computer to build the implant. Because of this, they were able to calculate the dimensions of the jaw bone that was missing.
TMJ Concepts in California used the data to build a silicone socket that had a titanium bone placed inside of it. In addition to this, they printed out a three-dimensional model of Jonathan’s facial structures, which was a transparent plastic skull that showed where the implant would be placed.
According to the doctors, the computerized design makes it possible to get an exact fit.
“They actually engineer each screw depth to match the bone thickness,” adds Dr. Girotto.
“In the old days, we went in and we kind of knew what we wanted to do, but we never knew 100 percent because we didn’t have the accuracy,” Dr. Polley adds. “Nowadays, however, we go in and we know exactly what we want to do.” “At this point, our measurements are quite precise to within a millimeter or so. When we go in now, it will really just be a matter of execution and making sure that everything fits.”
Jonathan had a procedure at Helen DeVos Children’s Hospital on May 27 that lasted for eight hours in order to obtain the implant. Surgeons performed procedures on both his upper and lower jaws in order to realign them along the midline of his skull. They proceeded to fix the titanium bone and joint in place thereafter.
Jonathan’s jaw had to stay wired shut for the next two weeks, and he was only allowed to consume liquids during that time. According to his mother, it was the most difficult part of the procedure. Jonathan became bored of the protein-powered milkshakes that she had him drink since she wanted to make sure he drank enough calories.
‘Blessed’
At the follow-up appointment, Jonathan had six weeks after his surgery, he was happy to see Drs. Girotto and Polley shook their hands. Jonathan smiled.
Dr. Polley is doing an examination on the replacement jaw. He takes note of the way in which Jonathan’s features have begun to settle into place. He advises him to continue the activities that expand the mouth and stretch the muscles in that area.
“You look fantastic,” he tells me. “You have a very attractive appearance.”
At their house, Deb has observed Jonathan’s eating patterns shifting subtly over time. In the past, she would reduce the size of the bits of his flesh to a very fine consistency. Now that he has had his teeth straightened, he is able to consume a larger variety of meals, such as a bacon cheeseburger.
And it isn’t lost on her that his face is perfectly balanced. Recently, Jonathan was telling her about something, but she was more interested in what he was saying because of the expression on his face.
“We are facing one other directly, and as I gaze into his eyes, I can’t help but think, ‘Oh, my word. “I can’t get over how straight your face is,” she exclaims. “I find it hard to believe that this is indeed him. I was on the verge of tears. Oh my gosh, that was my first thought. That is absolutely incredible.'”
When asked what he feels about the implant, Jonathan just shrugs his shoulders. He is aware of how significant that is. In addition to this, he is aware that many people adore and care about him. When asked why, he flashes a grin and a little ashamed expression.
“I don’t know,” he claims to not know. “I am blessed.”
