‘The best feeling in the world’ | Health Beat

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

They would happen up to 10 times a day, sometimes strong enough to knock him off his feet.

Medicines helped a little. And the seizures got worse.

“During one, he split his lower lip wide open, which required stitches,” said Nick Oostveen, his father.

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

Eventually, Angel Hernandez, MD, chief of pediatric neurology at Corewell Health Helen DeVos Children’s Hospital, diagnosed Everett with intractable epilepsy, or drug-resistant epilepsy.

The doctor recommended a hemispherectomy, a rare brain surgery that would remove one of the brain’s hemispheres, rendering it nonfunctional.

The success of the operation depends on knowing exactly which area of ​​the brain is causing the seizures. In 2019, testing found a spot in the left hemisphere of Everett’s brain.

The results had an accuracy rate of 95%.

Nick and his wife Danielle were left worried.

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

So the Oostveens came up with the idea.

Even as his seizures worsened, Everett continued to smile and remain optimistic, always ready to eagerly hug family and friends.

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

Weighing options

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

Doctors diagnosed him with congenital heart defects in the womb. He was born prematurely in the fall of 2016. At 7 days old, he underwent hybrid closed-heart surgery.

He made good progress.

However, at 7 months he suffered a stroke, with a large hemorrhage in the right frontal lobe. He underwent brain surgery and then spent a week in an induced coma at a children’s hospital.

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

Everett thrived, recording one therapeutic milestone after another.

This amazed parents and therapists, whose hopes for Everett were initially so dashed.

But soon his parents from Hudsonville, Michigan, began 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 take 30 seconds and he would be back to normal.”

Doctors began the process of finding drugs to control the seizures. Some worked a little. None of them worked well enough.

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

But the operation requires a complex decision-making process.

“We have to go through multiple pre-surgical evaluations to determine if someone is a good fit,” Dr. Hernandez said.

Given Everett’s severe seizures—and because he had already suffered disabilities from a stroke—doctors considered him an excellent candidate for a hemispherectomy.

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

Surgery is rare. Detachment of the brain lobes makes one half of the brain – the one that causes the seizure – permanently non-functional.

However, because the brain can rewire itself with new circuits, recovery can be remarkable.

“Children’s brains are still growing and can direct themselves at an impressive rate, especially before age 10,” said Dr. Hernandez.

Advanced recording

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

Non-invasive brain mapping technology precisely locates the sources of epilepsy, greatly improving the quality and efficiency of pre-surgical assessments.

Everett became one of the first pediatric patients at Corewell Health to be examined with this technology.

“Everett slept for about 90 minutes,” Danielle said. “The images showed his brain so clearly and the doctors were able to pinpoint the area in his brain that was causing the seizures.”

Very advanced recording is very accurate.

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

Although they knew there were significant risks with the hemispherectomy, it gave Everett a great chance of a seizure-free life. And they knew that the surgeons were sure where the trouble spot was.

“The light is back”

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

The Oostveens learned of the risks involved in the procedure and knew it would set Everett back and erase the successes he had achieved. But they hoped he would recover quickly and continue his development without debilitating seizures.

“We’ve already seen him completely paralyzed on the right side,” Nick said. “He learned to crawl, then to walk. He learned to use his right hand. We thought we were ready.”

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

He spent several weeks at the Mary Free Bed Rehabilitation Hospital, recovering from surgery.

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

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

The care team urged them to be patient.

“For patients with this type of brain surgery, it’s like being hit by a car or having a major head injury,” Dr. Hernandez said. “The brain is trying to repair itself as it heals. And with Everett’s complicated history, it took longer than expected.”

Every day, Danielle and Nick reminded each other to look at the bigger picture.

Everett had not been seen to have a single seizure since the surgery.

One morning, Nick made a funny face – the kind of crazy dad that Everett always smiled at.

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

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

‘Back to being yourself’

When Everett returned home, he continued to improve.

Quickly.

Five weeks after the operation, he surprised his parents by striding across the living room.

Eight months later he could walk. And today he is learning to run.

He is now 6 years old, making progress in school, meeting all the goals set for him by his therapists.

He has not had a single seizure since the operation and does not require anti-seizure medication. His development is now more advanced than before the operation.

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

The Oostveens are still not sure what to expect in the long term. But above all, Everett has shown himself to be incredibly resilient.

“At one point we were told he might never walk,” Nick said. “And he runs. He still doesn’t speak, but we have many ways to communicate, including iPads at school.”

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

In the years to come, he would end up needing multiple heart surgeries. But his family remains grateful for his progress—and for the care and technology team members who helped make it possible.

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