‘A walking miracle’: Grand Forks boy undergoes surgery that removes half of his brainGRAND FORKS – Ryan Erickson was 11 months old when his parents were told that part of his brain, the left hemisphere, would need to be surgically removed.
By: Pamela Knudson, Forum News Service, INFORUM
GRAND FORKS – Ryan Erickson was 11 months old when his parents were told that part of his brain, the left hemisphere, would need to be surgically removed.
Julie and RJ Erickson, of Grand Forks, took a few minutes to discuss it and made the decision to go ahead.
“There was no choice, no other possibility,” Julie said.
“When I look back, it’s like a movie. We were in a ‘fight or flight’ mode.”
The decision was clear, she said. His condition, marked by an increasing number of severe epileptic seizures, was life-threatening.
Six days later, Ryan underwent the 11-hour surgery, a functional hemispherectomy, at a St. Paul hospital. That was in June 2007.
Today, he’s a happy, smiling, energetic 6-year-old who attends kindergarten at Ben Franklin Elementary School, where his sister, Jadee, 10, is a fourth-grader and his brother, Justin, 11, attends fifth grade.
Ryan is part of a regular kindergarten class, but his school day is a bit shorter than classmates, and he leaves class at certain times for occupational and speech therapy. He works with a full-time paraprofessional, who helps him throughout the day.
He still has mild seizures – four in the past six months – but “since May, we’ve had the best six months we’ve ever had,” Julie said. Technically, Ryan still has epilepsy, a seizure disorder, for which he takes two medications.
All told, there’s “a crew” of 11 people who work with him, she said. “We have a lot of meetings. We talk about goals.”
In addition to therapy at school, Ryan receives occupational, speech and physical therapy at Altru Rehabilitation Center.
“It’s good to have a team. I can let go a little bit,” she said.
Julie knew “from the get-go” that something wasn’t right with her baby boy. As a mother of two, she knew what a child should be doing at a certain age.
As an infant, Ryan wasn’t making eye contact, she said. “We couldn’t take him to busy places. He couldn’t handle those situations.” He didn’t make verbal sounds, and at 6 months, he wasn’t sitting up – nor did he show signs of trying to.
At 7 months, Ryan had a seizure at home. As frightening as it was, it presented another piece of the puzzle that helped his parents and medical professionals understand why he was not meeting milestones of normal childhood development. But, it took more than two months before doctors could give Julie and RJ a definite diagnosis: a brain abnormality called hemimegaencaphaly.
“The left side of his brain was made wrong; the cells were not made right,” Julie said. “The right side was completely healthy.”
Ryan’s condition worsened to the point where he was not learning, she said. “He was (either) sleeping or seizing.”
At their worst, the seizures occurred 10 times a day. “It was a very helpless feeling. We were on a rollercoaster,” Julie said. At one point, she yanked the doorbell off the front door of her home to eliminate intrusion by solicitors. “I couldn’t handle any more distress from outside sources,” she said. “It’s still off.”
On Memorial Day 2007, Ryan was airlifted to Children’s Hospital in St. Paul, where he was put on a round-the-clock EEG monitor to capture brain activity and underwent MRI testing. His illness was not because of a genetic circumstance or an inherited problem, she said. “It was more of a fluke.”
Doctors told Julie and RJ that Ryan would need to be on medications for the rest of his life or he could have surgery.
They tried seven medications typically used for such cases, all of which failed within eight weeks. The drugs didn’t deter seizures, which would last as long as 10 minutes.
When Julie and RJ were confronted with the prospect of a surgery to remove part of the brain, she remembers her first concern.
“It wasn’t, ‘Is he going to be able to drive, get married or go to college?’ ” she said. “I thought, ‘Will he still be Ryan? Will he still be my calm, happy baby?’
“The surgeon looked at me and said, ‘He will be. And, he’ll be even better.’ ”
The surgery was led by Dr. Mary Dunn, with whom the family is still in touch.
“She’s the woman who fixed him,” Julie said. “She saved his life.”
Ryan has had subsequent orthopedic surgeries to help him walk.
Because of his brain surgery, his right side grows “smaller and slower” than the left, Julie said. The muscles are tighter on his right side. Surgeons lengthened the tendon in his weaker right leg to help equalize the length of his legs.
Recovery meant a lot of leg-stretching exercises “to get his legs super strong,” she said. For three months after last winter’s surgery, he was confined to a wheelchair.
“Now, he can run,” she said. “He basically got a new set of legs.”
Because of the “plasticity” of an infant’s brain, the hemisphere that remains after surgery compensates and learns some functions normally controlled by the hemisphere that is removed. The cavity fills naturally with cerebral fluid.
Speech and language functions are centered on the left hemisphere, the part that was removed in Ryan’s surgery, so his therapists work on building his ability to make letter sounds and recognize words.
Since music is a “right-brain” activity, “we sing everything,” Julie said. “We make up songs – the ‘getting dressed’ song, the ‘brushing our teeth’ song, the ‘putting on our shoes’ song.”
Each hemisphere controls the opposite side of the body, so therapists work on strengthening the right side of Ryan’s body.
His siblings are helpful, too. They reinforce Ryan’s verbal abilities and use language during play.
“We’ll sometimes tickle and wrestle with him. We’ll hold him and make him say his words of the week,” said Justin, the 11-year-old. “It’s cool to see how his memory has improved so much,” Justin said. He’s also noticed changes in Ryan’s reaction to kids at school, and their reactions to him.
“He’s nicer now to kids he doesn’t know,” Justin said. “Many kids are really nice to him. At first, there were just a few kids who understood him. Now, he interacts with them.”
Julie wants other children to realize that, while Ryan is different, he’s not that different. “He likes the same things they do,” she said. “He likes pizza, swinging. He likes to swim.”
Ryan’s social life, too, has blossomed in recent years. “He’s got a lot of girlfriends,” Justin said, claiming some of the credit. “He got it from me.”
Julie credits her “great family, friends and the medical professionals working with him” for bringing Ryan to where he’s at now.
“He walks, he runs, he’s potty-trained, he’s social, he keeps his hands to himself, he can tell me what he wants,” she said.
Staying in the “here and now” is very important, she said. “It’s such a journey. As far as brain ‘recovery,’ to what level? Who knows?”
She wonders if they’ll still be working on the same functions in the future.
“That’s where you get yourself sick, if you look ahead.”
As a mother who’s studied theories behind the “nature vs. nurture” debate, she maintains a child’s development “comes a lot from how you’re brought up.”
The family belongs to a support group sponsored by The Hemispherectomy Foundation. Through this and other organizations, Julie tries to help others who are facing similar challenges. “I’ve found that support is huge.”
What the family has gone through is not fair, she said. “We are social, positive people. I’m not a person who’s going to sulk. I’m not like that; my husband is not like that.
The future could bring research developments, surgical options or technologies, like innovative communication devices, that could enhance his capabilities.
“You just never know what could happen in the future.”