This Is How Parker Canter Rolls
Life with Spina Bifida only slows him down a little
When he gets off the school bus, 7-year-old Parker is a flurry of hugs and talking and energy, just like any 1st grader. There’s just one difference – Parker whips his tiny wheelchair across a tricked out ramp before digging into homework or playtime. His limitations slow him down a little, but not by much.
“I think they really see what he goes through, and they’re grateful for the abilities they have,” says Randa. She’s a full-time mom to 5 children and also a registered nurse, a background that proved helpful when Parker came along.
It all started at the very end of Randa’s pregnancy with him, which had been healthy and uneventful until that point. That final prenatal check-up seemed more like a formality – a box to check.
“It was 37 weeks and I thought it would be a quick and easy check-up,” she said. At the very end of the day on a Friday, her doctor suddenly suggested an ultrasound and told her later he just had a feeling he should.
His intuition proved to be an astute one as it led to the discovery of something new, late in the game.
Parker had developed Hydrocephalus, a condition in which excess fluid accumulates in the brain. As an RN, Randa understood that Hydrocephalus often indicates other problems. But as a couple with a strong faith, while they understood it could be very serious, she and her husband, Mike experienced peace.
“We had a lot of people praying for us,” she says. “We had this feeling that our son would be born with special needs, but that we would be ok.”
Parker was born with Spina Bifida — a severe case. Spina Bifida literally means, “open spine.” It’s the most common neural tube birth defect in the US and happens when the development of the brain, spinal cord and it’s protective covering fails to develop completely. Sometimes there is a space left open that creates problems with systems in the body, depending on the location of the opening. Repairing the opening or lesion can happen via fetal surgery and other times, the repair is made immediately following birth.
There are levels of severity, but almost all children born with Spina Bifida suffer problems related to bowel, urinary and/or gastrointestinal function, and most have reduced mobility. While Parker wasn’t diagnosed until after his birth, many cases are discovered prenatally.
Parker was whisked to surgery
an hour after he was born to close the opening on his back (Myelomeningeocele) to minimize the risk of infection. The following day, Parker underwent his second surgery to insert a shunt that would continue to drain the fluid from his brain. “They didn’t know what level of brain damage he might have suffered – we were told he might never walk, speak or recognize us.”
“That was the scariest part,” said Randa. “I knew I could handle physical challenges. But the idea of a child who was incapable of recognizing us or talking was …,” she says, her eyes brimming. It’s hard to process that today, watching Parker zoom around and insist on peeling out of his wheelchair to wrestle with his big brother, Teagan, a 6th grader.
“We celebrated every single milestone,” said Randa, whose deepest fears never materialized.
While the build-up of excess fluid is controlled by the shunt, the family knows there is always a risk it could fail, causing fluid to back-up in the ventricles of his brain. Parker proved to be small but mighty. It was the beginning of a journey his family would take in navigating a medically complex child. After his delivery, the family met and began to consult with the many specialists he would need over the years. She had mixed results with many of them who were well-intentioned, but inflexible.
Like many parents with a child with special needs, the Canters connected with families coping with Spina Bifida, and she was referred to Phoenix Children’s.
“Dr. Ritchie was the first doctor I worked with, and he asked about the whole picture,” Randa said. He listened to her and took her opinions into account, she said. That made all the difference for her.
“Before coming to Phoenix Children’s, I had a specialist who refused to remove the orthotics (to promote as much strength and form in the legs as possible) he wore 23 hours a day. But I wanted to take them off because they were causing blisters on his feet he couldn’t feel, and they needed to heal.”
At Phoenix Children’s she says, the experience was dramatically different. The presence of Child Life Specialists, who work to make medical care and procedures less stressful, were a big help, too.
Today Parker sees a range of specialists at Phoenix Children’s, all of which families can see in one day under the same roof at the newly minted Spina Bifida Clinic.
Now, in 1st grade, Randa reports Parker is “super-smart.” His teachers and his care team say they just can’t believe how bright and active he is. “It’s just a miracle,” she says.
The hardest thing she says is juggling his many needs while also considering the rest of their family. Parker engages in physical and occupational therapies. “Bowel care” is how she describes the long process every day of helping Parker go to the bathroom, which is time-consuming and isolating for a little boy. They have to consider his needs, always, which can make travel tricky. But they always find ways to make things work.
“I never want my older kids to feel like they’re missing out or not experiencing things they want to because of Parker’s needs,” Randa says. She goes on to say though, that Parker’s siblings and friends have also benefitted from their relationships with him.
“They have to get creative in playing a game so he can be included,” she says. “They’re just so much more compassionate and mature,” she says, smiling while Teagan crawls on the floor, teasing his little brother who loves it until he doesn’t. Just like all little boys, because that’s how Parker rolls.
Imagine you’re 6 years old. After a terrifying accident, you were pried from a car, whisked into an ambulance and rushed to the trauma center at Phoenix Children’s Hospital. All you can see are glaring lights and the faces of people you don’t know. Doctors are urgently giving orders. Nurses are putting a mask over your face and needles in your arm. You can‘t breathe; you’re disoriented, and no one knows your name yet. Your tears spill over and you begin to panic. Then, a Child Life Specialist enters the room. Everything changes.