Jack Frazier was a typical 3-month-old baby. Then on a random day, he had a stroke.
He was at day care, and the staff didn’t realize anything had happened. Jack was fussy, and then after a nap he had trouble waking up, his mom, Katy Frazier, remembers.
The Fraziers called their pediatrician, who advised them to take him to the emergency room at Dell Children’s Medical Center of Central Texas and ask for a CT scan.
That began Katy, wife Mackenzie and son Jack’s three-year journey from stroke to a hemispherotomy. That surgery cuts the connection between the two sides of his brain so that the side where he had the injury could continue to have seizures without affecting the healthy side of his brain, which does all the work.
A devastating stroke
Jack’s stroke was “very surprising and unexplained,” said Dr. Karen Keough, with Pediatrix Child Neurology Consultants of Austin, Texas, who treated the boy. “There’s no reason to have had that.”
It’s rare, Keough said, and usually happens because of a clot or bleeding in the brain. Sometimes it happens in children with congenital heart disease. Sometimes it happens in healthy kids, like Jack.
In Jack’s case, he developed a blood clot on the right side of the brain that led to the stroke. The stroke then caused seizures.
The CT scan at Dell Children’s showed he’d had a stroke and that it had affected half of his brain.
Jack was admitted to the hospital March 16, 2019, to try to get his seizures under control. They couldn’t, Katy Frazier said. “He had such a bad injury.”
He stayed two weeks so they could sedate him and then try different medications.
Finally, Jack could come home.
Looking for answers
When Jack was 5 months old, Katy Frazier was playing with him and discovered something odd on Jack’s right arm. It turned out he had an aneurysm in his right brachial artery, Frazier said.
He needed a microvascular surgeon who could take out the aneurysm and replace the artery with a healthy vein. They traveled to Texas Children’s Hospital in Houston to have that surgery done when Jack was 7 months old.
Jack had to be heavily bandaged and the arm kept immobile, which meant not being able to crawl or do anything for himself.
By 9 months old, Jack was having weird ministrokes at night. His body would drop. He would drop his head. Then his arm would flail.
The Fraziers went to a neurologist, who said it was out of his depth. A second neurologist put Jack back in the hospital and tried an $84,000 steroid, which insurance mostly paid for. Jack had to stay in the hospital. He gained a lot of weight because of the steroid. “We were giving him two bottles a feeding. He would scream,” Frazier said. “That was really hard. His arm was wrapped up. He was just angry all the time.”
The steroid did help.
Every three months they would do an electroencephalogram to see if he was still having seizures or ministrokes.
“We were just going through different medicine combinations all the time,” Frazier said.
Two weeks after he turned 2, he had infantile spasms, a type of seizure. The treatment for these spasms wasn’t covered by their insurance after a child turns 2.
“It was a big ordeal,” Frazier said.
Living in frustration
The Fraziers said they didn’t feel as if they were making progress. They knew about Keough because she saw Jack in the hospital as the attending neurologist. After the spasm, “we switched immediately to her,” Katy Frazier said. “She just changed everything for us.”
Frazier remembers being “very confused and scared.” Starting that March, in 2021, they did a bunch of new studies on Jack’s brain.
That August at an appointment, Keough brought up the idea of the hemispherotomy, Frazier said. Frazier had read about it but didn’t think Jack would be a candidate because his seizures weren’t visible all day long.
“My wife and I asked what would the other options and alternatives be,” Frazier said.
They remember Keough laying it out this way: It would be “a reactive life. He has seizures; we react. Nothing is proactive. We can’t guarantee he’s fine one day or the next.”
Katy Frazier remembers being “absolutely terrified.” Jack was behind developmentally. They weren’t sure how much of the slow cognitive development was because of the strokes or the seizures or the medication for the seizures.
At age 2, Jack was walking, but he wasn’t talking.
“He was having 45-minute meltdowns. He was angry all the time,” Frazier said.
Jack’s developmental lag “was more than expected from the stroke itself; it was more than what you would expect from medication and seizures,” Keough said. “The motivation of pursuing surgery was to take away those factors. We hoped we would have not just improvement but an impact.”
Accessing only the good half of the brain
They could do the hemispherotomy because the right side of his brain wasn’t doing anything for him except causing seizures. Everything that he was able to do was being controlled by the left side of his brain.
The typical reaction to this idea of cutting off communication to one side of the brain is one of confusion, Keough said. “What do you mean? How can he live on one half of the brain?”
The truth, Keough said, “is he can do quite well.” Everything becomes 100% the responsibility of the healthy hemisphere, Keough said. “That was already happening. … He had had so much damage from the stroke, the (right side) wasn’t doing much good work.”
Especially if this happens when children are very young, “the brain is very happy to reshuffle and move things around. The brain is very plastic,” Keough said. This type of surgery wouldn’t work in an adult, she said.
On Dec. 13, 2021, Jack had the hemispherotomy to cut the connection between the two sides of his brain. He was just a month shy of his third birthday.
It’s not an easy surgery from which to recover. Jack had what Frazier called “the worst headache of your life. He is screaming and angry and not consolable.”
He went home after a week, but it took a month before he started feeling well, Frazier said.
Seeing the changes
Each consecutive month, though, they started seeing changes.
“He started having less outbursts, and the duration was less,” Frazier said. “The surgery helped with getting Jack’s mind to be calm.”
Jack was able to be weaned off of the seizure medication, and by May 15, he was seizure-free and seizure medication-free. They celebrated with a party.
Before the surgery, Frazier said she and her wife tried not to think about the future.
“The future was tricky,” she said.
They thought about needing to move him into a home for people with intellectual disabilities. They envisioned his younger sister, Ada, taking care of him.
He will still have a limp, and his peripheral vision has been affected by the stroke, but “there’s a chance Jack could live a healthy life,” Frazier said.
And now he’s talking.
“His capacity for knowledge is there,” Frazier said. “He learns so quickly.”
“I wasn’t expecting to see such crazy results with the cognitive piece,” Frazier said. “The behavior piece is what I crossed my fingers for. I was just hoping he would have a happy day.”
Now at age 4, Jack loves to go to the park, and he loves Jeeps. He can play independently and self-soothe. He loves to read “Pete the Cat” books.
“He’s so social and wants to have friends,” Frazier said.
She wrote a book for him about his first three years of life called “Jack’s Brilliant Brain.”
Jack is “a great example of how much better things can get,” Keough said.