Grand Forks boy undergoes surgery that removes part of his brain
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, or "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 was not 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 six months, he wasn't sitting up -- nor did he show signs of trying to.
At seven 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 another 2½ 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.
The surgery was "very successful," she said.
They also inserted a device in the growth plate in his left knee to slow the growth over the next couple of years.
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."
Ryan "loves people," Julie said. "He's always smiling, always trying to make people giggle. He makes every person feel good." He also "will charm you, if he doesn't want to do something."
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."
For people who have children with special needs, "those parents that embrace it, their children thrive," she said.
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.
"We're not going to let it eat up our relationship. We're not going to let it eat up our children."
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."
Julie welcomes the opportunity to speak to students in medicine, occupational therapy and psychology to deepen their understanding of conditions such as Ryan's and what he and families like his need from health care providers.
Sometimes, her children join her in these presentations.
"His story can affect so many different crowds," she said.
Cindy Janssen, a UND occupational therapy teacher who's invited Julie and Ryan to speak to her classes, said Ryan's condition was a congenital anomaly that's "pretty rare."
"It's amazing the things he can do. According to the books, he should not be very functional; he shouldn't have speech capability," she said.
"He's a walking miracle, he really is."
She appreciates the family's positive approach.
"Some people go through things and consider themselves victims. And others are enormously grateful."
Janssen's students "continually are moved" by Julie's story, she said.
Julie also talks with medical students "about how to be a good doctor and what parents hope for" from physicians and the health care system.
She also gives motivational talks, emphasizing the importance of a positive attitude, to church groups.
"You can take a horrible, awful situation and you can benefit from it," she said. "It's oftentimes how you perceive it. You can't really change the situation.
"It's a long journey. It doesn't stop. It doesn't go away."
The Ericksons were also instrumental in obtaining equipment for "cage therapy" that uses pulleys to help adults and children with muscle-strengthening as part of the physical therapy program at Altru Rehabilitation Center.
"We were one of the first families to go out of state to receive this therapy," she said. For several weeks in Florida, they went through the intensive cage therapy which produced good results for Ryan.
Becoming a parent of a child with special needs has led Julie down a different path. She returned to UND as a full-time student and plans to complete a bachelor's degree in psychology this May and go on to earn a doctoral degree in counseling psychology at UND.
Her goal is to work closely with families who have children with disabilities, such as autism and ADHD, attention deficit and hyperactivity disorder.
She envisions a career that includes "fighting and advocating" for these families, and helping them to lean on others.
"I know collaborative care is so important to give (Ryan) the best life he deserves," she said.
She wants to do the same for other families.
"I want them to have the best services and the best way of life possible."
This was her answer to "How do I help the most people?" she said. "Having a child with special needs pushes me the most to go the route I'm going. I get to watch this every day.
"In some weird way, it's a gift."
Julie said she has "so many dreams for Ryan. I want him to fit in, to be happy, to be himself .... He's going to have a life outside of me.
"I have no doubt he's going to have his own thing."
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