Kim Robért was a nervous wreck as she sat in a waiting room at St. Louis Children’s Hospital in October 2003.
Months of research and conversations with a handful of families whose children had successfully undergone selective dorsal rhizotomy surgery at the hands of Dr. Tae Sung Park convinced Robért the procedure was right for her son, Matt.
Still, there was a remote chance the procedure – which involves removing a chunk of vertebrae and manipulating nerves in the spinal cord – could leave her son paralyzed, sterile or cause him to lose control of his bladder.
Robért and her husband, Mark, sat in the waiting room for seven hours with those worst-case scenarios running through their heads.
Despite their worries, the Robérts never questioned their decision because they knew it was the only chance Matt had to break the shackles of cerebral palsy.
“I knew in my heart we had a little boy who stood no chance of ever walking independently if we didn’t do something drastic,” Kim said. “It was risky, but we thought the reward outweighed the risk.”
Matt will walk across the stage at Okie Blanchard Stadium to accept his diploma this morning from Chey-enne East. The 18-year-old will do it without crutches, braces or a walker.
This fall, Matt will enroll at the University of Wyoming, where he will be a manager for the Cowgirls basketball team.
Yet those are merely the latest ways Matt has defied expectations.
Kim didn’t know she had an incompetent cervix until Matt was born three months premature.
The amniotic sack didn’t even break when all 2½ pounds of him arrived Jan. 16, 2000. Nurses at Cheyenne Regional Medical Center did a good job of getting Matt out and ventilating him, Kim said, but he was still deprived of oxygen long enough to kill some white matter in his brain.
That periventricular leukomalacia is what caused Matt’s cerebral palsy.
Cerebral palsy affects people in many ways.
“You can be so minor you can barely tell you have it, and you can be so severe you’re bedridden and can’t do anything for yourself,” Kim said.
In Matt’s case, cerebral palsy made muscles in his legs constrict so much he couldn’t wiggle his toes or sit up with his legs in front of him.
The muscles were so spastic his legs would scissor when he eventually tried to walk with the assistance of a walker.
The only reprieve he got from the tightened muscles came when he slept.
“It was like an electrical current,” Mark Robért said. “He would go to sleep, and it would interrupt the signal that made his muscles contract.
“As soon as he woke up, that switch flipped and his legs stiffened up again.”
The spacial dorsal rhizotomy interrupted that signal by cutting the nerve that sent it to his legs.
“His brain is still sending the signal, but his legs aren’t getting it,” Mark said.
Added Kim: “It’s a tricky surgery because they have to release enough spasticity that he has movement, but not so much that he has no strength.”
Matt wasn’t out of the woods even after the SDR surgery, however. The constantly tightened muscles warped his leg and foot bones and displaced his knee caps.
Matt had to have the upper and lower leg bones in both legs broken and straightened as a 6-year-old. He had to have the surgery again at 13.
“I think the first surgery was easier because I was so young I didn’t understand what was going on. I just went with the flow,” Matt said. “The pain was a lot bigger problem the second time.
“I was stuck in bed for two months. When I did go out, I had to be in a wheelchair.”
More surgeries could still be in Matt’s future.
“I hope I don’t have any more, but you never know what is going to come your way,” he said. “I am trying to be conscious about how much I’m stretching and staying in shape. All of that is to keep from having more surgeries, but it’s still out of my control.
“I’ll only have another surgery if it’s absolutely necessary.”
Matt communicated only through sign language for the first few years he was alive. Specialists thought maybe the cerebral palsy had impacted him cognitively.
“Then, one day, he starts talking in complete sentences,” Mark said with a laugh. “He went from saying nothing to saying, ‘Mom, I want a cookie.’”
Kim remembers other mothers being surprised she wasn’t crying when she dropped Matt off at Henderson Elementary for his first day of kindergarten.
They were coming to terms with their babies growing up. Kim fought back tears of joy because her baby was starting school on time.
“I was told he wasn’t going to live,” Kim said. “Then I was told that if he did live, he was going to be severely disabled.
“I couldn’t cry about kindergarten because I was so happy we had gotten to that point.”
Matt worked with paraprofessional Kim Washburn from first through sixth grade.
“When I was having trouble, she gave me a sense of security and helped me get into a good spot with whatever I had to do,” Matt said.
“I wouldn’t be where I am today if she wasn’t there.”
Sixth grade was the last year Matt had help from a paraprofessional. He is graduating from East with a 3.5 cumulative grade point average.
Mark calls Matt a walking basketball encyclopedia, but sports weren’t always a significant part of his life.
All too often, they were a painful reminder of his physical limitations.
“The kids in our neighborhood and his friends were really good about trying to include him, but they would get wrapped up in what they were playing, and they’d end up leaving him behind,” Kim said.
Well-intentioned coaches made Matt a team manager for elementary school teams. Without any real duties, Matt was often an afterthought at the end of the bench.
“I hated it,” Matt said.
Matt grew tired of being left out and withdrew, turning his attention to trains, movies and first-person shooter video games like “Call of Duty” and “Fallout.”
Eventually those distractions lost their luster.
“I enjoyed them, but I wanted to branch out and find more meaningful things to do,” Matt said. “I thought I had a purpose to serve.”
He decided to give sports another try and was determined to play basketball during his seventh-grade year at Carey Junior High.
“At the time, it was kind of something for me to work toward and keep me going,” Matt said. “I thought it might work, but I got a reality check.”
That reality check came in the form of the three-man weave drill.
“It was a tough pill to swallow,” Matt said. “I had to come to terms with the fact there are things life wasn’t going to let me do.”
Rich Renner – a friend of the Robérts – asked Matt if he wanted to be a manager for Carey’s eighth-grade boys team. This managerial role would be different from the ones Matt loathed in elementary school, though.
“I had him keep score for us on an iPad,” Renner said. “He let me know when guys picked up their third fouls of the game, check out uniforms and that sort of thing.
“I don’t think I gave him that much, but I knew he loved basketball and wanted to be part of the team. He was a big part of our team; he just didn’t wear a uniform.”
Matt appreciated having actual responsibilities.
“I felt valuable, and I felt wanted,” he said. “This was an avenue for me to stay involved in sports.
“I wasn’t going to go back to what I was doing before. That was arguably the best choice I made for myself.”