When Mike and Debra Koster first held their newborn son Jonathan, 22 years ago, they were overcome with emotions such as these.
I was also taken aback.
They were unaware of the fact that one-half of his face had not formed till at that very time. He was missing the right ear as well as the right jaw bone.
But the arrival of their beautiful boy into the world had been preceded by a torrent of prayers and longing. There was no birth abnormality that could dampen their elation.
“I just asked the good Lord for one baby,” Deb adds. “Please grant my request.” Jonathan is now a young man who is just as tall as his mother, and she beams with pride as she looks at him.
The Koster family, who lives just west of Grand Rapids, Michigan, is in awe at all the doors that their son has opened for them, the people that they have met as a result of him, and the medical advancements that they have seen as a result of him.
This includes a more recent advancement that they had previously considered unachievable, which is a titanium jaw for Jonathan.
The pediatric craniofacial plastic surgeons at Spectrum Health Helen DeVos Children’s Hospital, John Polley, MD, and John Girotto, MD, created the prosthetic jaw to match Jonathan’s unusual facial anatomy. Jonathan had surgery to have the jaw implanted.
The oral and maxillofacial doctors think it’s a one-of-a-kind case since it’s one of the first unique jaw implants ever made for a patient born with hemifacial microsomia. This is the medical term for the congenital anomaly that Jonathan was born with, which is known as a condition in which the bottom half of one side of the face is not fully grown. Due to the fact that Jonathan never had a right jaw bone, the surgeons were unable to put a conventional replacement joint on him.
“For a unique person like Jonathan, you need a unique solution,” Dr. Girotto explains.
Dr. Polley chimes in to say that “He did great with it.” “It’s the best result that I’ve had with these severe grade 3 hemifacial microsomia patients in my 28-year career, so we are very excited about this technique,” the doctor said. “It’s the reason why we are very excited about this technique.”
Jonathan, who has had 25 procedures, shrugs off the attention that has been focused on his new jaw.
“It’s a little bit different,” he admits.
Because he is an outgoing young man with an active social life, he would rather talk about his busy summer, which includes a week at a family camp for children with special needs, a fishing trip with his father, and pool parties.
“I have so much that I can do,” he adds. “I have so many options.” “I am an extremely skilled organist and pianist,” they said.
He folds his arms and smiles for the camera while posing for a snapshot with the physicians as they sit on a seat in the examination room. A dream squad. Harsh and always prepared.
His parents are pleased with the improvements they have seen, such as how Jonathan’s new jaw makes it simpler for him to eat and gives his face more symmetry.
“He’s got a nice straight smile, and his chin has come a long way,” adds Mike. “He’s got a lot of confidence.”
While trying to establish a family for ten years, Deb, a certified practical nurse, and Mike, a retired fireman, struggled with infertility concerns both during and after their marriage. In the end, they came to the conclusion that they should attempt in vitro fertilization. At the age of 38 in 1993, Deb had five eggs implanted in her body.
“Just one was enough,” she explains. “That very moment was nothing short of a miracle.”
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.
The strength that we drew from, adds Deb, was our religion. “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.
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 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.
“His personality really blossomed at church,” adds Deb. “It was a great place for him to be.” “He is a good friend to everyone. 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.”
In the presence of his father, he gives his pals rides on an all-terrain vehicle, which they drive while bumping down a trail that has been cut through the thick grass.
As he whips around a bend at breakneck speed, he exclaims, “Now we’re getting somewhere!”
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 virtual surgery on the computer to simulate the procedure. 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,” explains Dr. Polley. “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. Following that, they fastened the titanium bone and joint into place.
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.
During his follow-up appointment, which took place six weeks after his surgery, Jonathan flashed a bright smile as he shook hands with both Dr. Girotto and Dr. Polley.
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. It made me feel like crying. Oh my gosh, 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 have been given much.”
