Hunter was diagnosed with a rare blood vessel disorder called moyamoya disease and needed brain surgery to prevent another stroke. Today, he's back to living life fully, fully as himself.

Child Health, News | 3 months ago

Still a Kid: Hunter’s Journey From Stroke to Brain Surgery

Hunter was diagnosed with a rare blood vessel disorder called moyamoya disease and needed brain surgery to prevent another stroke. Today, he's back to living life fully, fully as himself.

Like lots of 12-year-oldsHunter Hoke counts down the days to summer vacationIt’s when he gets to do all his favorite activities – like going to the beach, and especially swimming. 

But summer looked different in July of 2017, when Hunter started showing baffling symptomsincluding drooping on the left side of his face and limited use of his left, dominant arm. 

His mom, Stacy, knew what the symptoms looked like, but it didn’t seem possible. “He was 8. How can someone so young have a stroke?” she says. 

Scans revealed Hunter did have a stroke, and further testing uncovered why: Hunter has a rare blood vessel disorder called moyamoya disease.“ We don’t know why it happens, but moyamoya is a disease where the blood vessels feeding the brain start closing off,” says Scott Wait, MD, the medical director of pediatric neurosurgery at Atrium Health Levine Children’s Hospital

Because there’s no cure for moyamoya disease, Hunter was at risk of future strokes. The best treatment was a bypass surgeryalso called cerebral revascularizationwhich is as complex as it sounds – and made even more complex for Hunter, who’s considered medically fragile due to having Down syndromeThe surgery involves sewing really small vessels togetheras small as 1 millimeter,” explains Dr. Wait. “When you’re doing it, you have to clamp the arteries in the brain so you can sew another blood vessel to it, and you need to do it quickly.”

Not only is it intricate, but the bypass surgery comes with short-term stroke risks of its own. Fortunately, the cerebrovascular neurosurgery team at Levine Children’s Hospital performs many of these rare operations each year and has never had a stroke in one of these patients. That’s one reason it’s one of the best children’s hospitals for pediatric neurology and neurosurgery in the United States.

“We have a well-polished team that’s used to taking care of these patients. This includes an excellent pediatric intensive care unit and operating room, as well as excellent neurologists and anesthesiologists, amongst many others,” says Dr. Wait.

Almost right after his brain surgery in December of 2017, Hunter was ready to get up and going – literally. “I said, ‘No, buddy, you’ve got to get back in bed,’” Stacy laughs, recalling how easily Hunter bounced back from the procedure. And 2 days later, he was headed home, eager to return to normal life.

Hunter can do anything he wants to do

When the Hokes first heard Hunter’s diagnosis, they worried about the long-term effects of the stroke and surgery, especially on someone so youngBut Hunter recovered fully and is the same outgoing, energetic kid he’s always been. “He’s still his normal self. It’s like nothing ever happened,” Stacy remarks. “I think Levine Children’s Hospital blew other hospitals out of the water. It’s top on the list if there’s a health concern you’re not sure about.” 

Hunter will likely need bypass surgery done on the other side of his brain down the road, but his brain’s blood vessels are growing so well, it can wait. Hunter can do anything he wants! He can ride rollercoasters, play sports, even fly,” says Dr. Wait. 

One day, Hunter will do all those things and moreBut todayhe just wants to sit back, relax and enjoy summer vacation.