‘The best feeling in the world’ | Health Beat

‘The best feeling in the world’ | Health Beat

Everett Oostveen, 6, lived with epileptic seizures for much of his young life.

They’d happen up to 10 times a day, sometimes powerful enough to knock him off his feet.

Medication did little to help. And the seizures worsened.

“During one, he split his bottom lip wide open, requiring stitches,” Nick Oostveen, his father, said.

His seizures were part of his complicated medical history: He was born with congenital heart defects that required surgery as a newborn, and he suffered a stroke at seven months that required brain surgery. Doctors then diagnosed him with epilepsy.

Ultimately, Angel Hernandez, MD, division chief for pediatric neurology at Corewell Health Helen DeVos Children’s Hospital, diagnosed Everett with intractable—or medication-resistant—epilepsy.

The doctor recommended a hemispherectomy, a rare brain surgery that would remove one of the hemispheres of the brain, making it non-functional.

The surgery’s success relies on knowing exactly which area of the brain is causing the seizures. In 2019, testing had found the site in the left hemisphere of Everett’s brain.

The results had a 95% accuracy rate.

Nick and his wife, Danielle, remained concerned.

“Danielle and I just felt like 95% wasn’t good enough,” Nick said. “Not if we were going to take away the whole left hemisphere of his brain for the rest of his life.”

So the Oostveens tabled the idea.

Even as the seizures worsened, Everett continued to smile and remain upbeat, always willing to dispense eager hugs to family and friends.

“People often describe him as the sweetest little boy they’ve ever met,” Danielle said. “He’s the kind of kid who makes your day better.”

Weighing options

Everett had already been through a lifetime of procedures before his first birthday.

Doctors had diagnosed him with congenital heart defects in utero. He was born prematurely in fall 2016. At 7 days old, he underwent closed-heart hybrid surgeries.

He made good progress.

At 7 months old, however, he suffered a stroke, with a large brain bleed in the right frontal lobe. He underwent brain surgery and then rested in an induced coma for a week at the children’s hospital.

Weeks later, the family went home to begin the hard work of recovery. The stroke had weakened Everett’s right side, requiring constant therapy.

Everett thrived, notching one therapeutic milestone after another.

It amazed parents and therapists, whose hopes for Everett had initially been so guarded.

But soon, his parents, of Hudsonville, Michigan, started noticing what they thought might be focal seizures, perhaps eight to 10 times a day.

“We didn’t know exactly what we were looking at,” Danielle said. “It would last for 30 seconds and he’d go back to normal.”

Doctors began the process of finding medication that would control the seizures. Some worked a little. None worked well enough.

There were other options, including surgery and the implantation of devices, as well as dietary interventions such as the ketogenic diet or a modified Atkins approach.

But surgery requires a complex decision-making process.

“We have to go through multiple pre-surgical evaluations to establish whether someone is suitable,” Dr. Hernandez said.

Given Everett’s severe seizures—and because he already suffered deficits from his stroke—doctors deemed him an excellent candidate for hemispherectomy.

It’s a daunting prospect, and Dr. Hernandez understands why any parent would hesitate.

The surgery is rare. Separating the brain lobes renders one-half of the brain—the one causing the seizure activity—permanently nonfunctional.

Because the brain is able to rewire itself with new circuitry, however, recovery can be remarkable.

“Children’s brains are still growing and can rewire themselves with impressive speed, especially before age 10,” Dr. Hernandez said.

Advanced imaging

In early 2021, Dr. Hernandez excitedly told the Oostveens about new technology called magnetoencephalography, or MEG, at the Jack H. Miller Magnetoencephalography Center.

The non-invasive brain mapping technology precisely locates sources of epilepsy, greatly improving the quality and effectiveness of pre-surgical evaluations.

Everett became one of the first pediatric patients at Corewell Health to undergo an examination with this technology.

“Everett was asleep for about 90 minutes,” Danielle said. “The pictures showed his brain so clearly and the doctors could pinpoint the area in his brain that caused the seizures.”

The highly advanced imaging is very accurate.

This gave the Oostveens confidence to schedule Everett’s surgery.

While they knew there were significant risks with a hemispherectomy, it offered Everett a strong chance of a seizure-free life. And they knew surgeons were sure about the location of the trouble spot.

‘The light came back’

In August 2021, Everett underwent the hemispherectomy to remove the left side of his brain.

The Oostveens had learned about the risks going into the procedure, and they knew it would set Everett back, erasing gains he had made. But they hoped he would quickly recover and continue his development without the debilitating seizures.

“We had already seen him be completely paralyzed on his right side,” Nick said. “He had learned to crawl, then to walk. He learned to use his right arm. We thought we were ready.”

The weeks that followed were challenging, with setbacks in Everett’s motor skills, communication and other areas.

He spent a few weeks at Mary Free Bed Rehabilitation Hospital, recovering from the operation.

“One day, we sat outside with him in a wheelchair,” Danielle said. “We had worked so hard to get Everett where he was, with all the intensive therapy from earlier brain surgeries.

“We couldn’t help doubting ourselves,” she said.

The care team urged them to be patient.

“For patients of this kind of brain surgery, it’s like you got run over by a car or a had a major head injury,” Dr. Hernandez said. “The brain is trying to fix itself as it heals. And with Everett’s complicated history, it took a longer than expected.”

Each day, Danielle and Nick reminded each other to keep their eyes on the big picture.

They hadn’t seen Everett have a single seizure since the surgery.

One morning, Nick made a funny face—the kind of dad antic that always got a grin from Everett.

Everett’s right side was still paralyzed, but Nick and Danielle saw his left lip turn up in a smile.

“That moment was huge for us,” Nick said. “The light came back to his eyes. We knew it was time to get back to work with him. And the more we got him moving, the more himself he became.”

‘Back to being himself’

When Everett returned home, he continued to improve.

Quickly.

Five weeks after surgery, he surprised his parents by taking steps across the living room.

Eight weeks later, he could walk. And today, he’s learning to run.

Now 6, he’s thriving at school, meeting all the goals his therapists have set for him.

He hasn’t experienced a single seizure since surgery and he doesn’t require any anti-seizure medication. His development is now further along than before the surgery.

“Those seizures were holding him back,” Nick said.

The Oostveens still aren’t sure what to expect in the long term. But Everett has shown he is remarkably resilient, above all else.

“At one point, they told us he might never walk,” Nick said. “And he runs. He still doesn’t talk, but we have many ways to communicate, including an iPad at school.”

These days, Everett is happiest when he’s working toward his goals in physical, occupational and speech therapy.

In the years ahead, he’ll eventually require multiple heart surgeries. But his family remains grateful for his progress—and for the care team members and technology that helped make it possible.

“It’s unbelievable to watch him grow,” Nick said. “He is back to being himself again, and then some. It’s the best feeling in the world.”