Neurosurgery team that saved him hopes this teenager forgets all about it

Jayden Schnall was an unforgettable patient for his doctors, a little boy with a rare condition that caused multiple strokes and could have killed him. But a decade after his time at MUSC Children’s Health, one of those doctors hopes it all becomes a distant memory for Jayden.

“Honestly, one of my goals is that he lives his life never thinking back about it,” said neurosurgeon Ramin Eskandari, M.D. “He goes, and he has a completely normal rest of his childhood. He goes on to do anything and everything he ever wished and never even thinks back. And that's when you know that your therapies have truly changed the course of someone's life – it’s where it's almost like you and their disease didn't even exist. And that’s the best feeling.”

 

Jayden’s mother is grateful Eskandari and his colleagues do exist. They solved a medical mystery and ensured her son would reach this point. Jayden is now 16, athletic and beloved. “He is six-foot-one, and he is the most amazing kid; I'm telling you. He is so polite. He's so kind. He's so good. I'm really proud of the man that he's becoming,” Megan Schnall said.

That young man was just 7 years old when he was rushed by ambulance to MUSC Children’s Health from a hospital in his hometown of Conway. Jayden’s mother said the first sign of trouble came when his bus arrived to drop him off from school.

“The bus driver just pulled up, and he was like, ‘Ma'am, ma'am, your son's not feeling well.’ And when I got him off the bus, he basically had nystagmus; you know, his eyes were flickering back and forth. And he had no control over his body. He was just a rag doll.”

News of what caused those symptoms was shocking. “When Dr. Eskandari told us that he had a stroke, we were all like, ‘What?’ It's just so, so rare.”

The doctors put Jayden in a coma until his brain swelling came down. “Slowly, he started to wake up, and slowly, he started to get better. Like all the way better,” his mother said.

“He walked out of the hospital and was completely asymptomatic,” Eskandari said.

 

But that wouldn’t last. “And then, basically over the course of the next year or so, he had more strokes. Nobody could figure it out. He had every test you could possibly imagine. All of his strokes were very similar – the same location, same blood vessels, same part of the brainstem. Eventually, he got to a point where he just was having so many strokes that it was starting to catch up with him, and he wasn't recovering as well. After each one, it would take him a little bit longer to recover,” Eskandari said.

Then came an “aha” moment. “One of our endovascular neurosurgeons, his name is Ray Turner, he changed Jayden’s head position on the table, and he came back and ran an angiogram, which means that you inject some dye and then you watch the blood vessels of the brain on the screen,” Eskandari said.

“We watched it, and it literally stopped flowing through that blood vessel, the same blood vessel that was causing his strokes. And he went back and moved Jayden’s head back into a neutral position and did the run, and the flow went back to being totally fine,” Eskandari said.

They finally had their answer. Jayden had bow hunter’s syndrome, a condition in which turning the head to the side, like a bow hunter might, can in some cases lead to a stroke.

But that was just the first step, Eskandari said. “From there, we knew we needed to fix it so it didn’t happen again. And so the question became, ‘How do you address something like this in a kid?’ And the typical solution to this is you fuse their C1 and C2 vertebrae so they cannot move their head in that direction anymore.”

Eskandari knew that wouldn’t work for a child. “We really started to think outside the box, and there was a new product that was available called a flow diverter. And it's a stent that goes inside of your artery.”

Stents are little tubes used to keep arteries open. Flow diverter stents divert blood from weak spots in the arteries. Eskandari said the team taking care of Jayden decided to try layering two of the flow diverters to strengthen the arteries so when he turned his head, it wouldn’t put him at risk of having another stroke. Those stents, along with medications, helped Jayden recover. Then, over time, something amazing happened.

“This is not a thing that would happen in adults, but his body remodeled his blood vessels so that he ended up not even needing those two major blood vessels that supplied the brainstem with blood. His body created a new blood vessel supply to his brainstem that doesn't rely on those blood vessels at all. And eventually those two blood vessels completely collapsed and were unused,” Eskandari said.

Jayden hasn’t had another stroke since. He’s now a high school basketball player in Conway.

Since their time at MUSC Children’s Health, Jayden’s family has talked with other families whose children have had strokes to help them navigate the aftermath. “There are a lot of things that change in your child,” his mother said. “He had multiple strokes, and those places in your brain don't ever repair themselves.”

But children can recover, she said, with the right help. “I want to stress how amazing the physicians were. We really trusted them, and I cannot say how amazing those nurses in the pediatric intensive care unit were. These were life-changing people who really affected my son's life and affected our life, who went above and beyond. We would not have gotten through everything if it weren’t for the level of care that we had.”