An Oregon baby underwent surgery to remove half of his brain due to a rare disorder and seizures.
Jackson Williamson was just 3 months old when he started suffering seizures. They were constant since June 18, his mother Kaitlyn Williamson told KTVZ, so she took him to a hospital in Bend, Oregon.
“Going into the emergency room, really just thinking it was maybe a bad cold or something was hard enough — and then to realize that it was seizures. It was just really scary — a lot of unknowns,” she told the outlet.
After arriving, Jackson was put on medications but nothing would mitigate the seizures. The infant was ultimately transferred via Life Flight to Doernbechers Children’s Hospital in Portland where he was diagnosed with hemispheric megalencephaly and heterotopia.
“This means Jackson has a malformation that caused the left side of his brain to be larger than the right side of his brain. He also has an abnormal grey matter and cysts throughout his brain,” Kenzie Hampton, family member of Kaitlyn, explained on a GoFundMe page created for Jackson. “His seizures continue and differ in severity from long lasting seconds, and some lasting for over 5 minutes.”
Doctors also concluded that Jackson was suffering up to 200 seizures a day.
“In the midst of the newborn days, we didn’t recognize that his right side was a little bit weaker, and that was because the left side of the brain seizing so much, he didn’t really have a lot of control over his right side,” Kaitlyn said, noting that she initially felt “very overwhelmed” with her son’s health emergency.
On July 2, doctors decided it was best for Jackson to undergo a hemispherectomy, in which the left hemisphere of the brain is disconnected from the right and the damaged tissue is removed but some brain tissue is left intact.
Doctors told Kaitlyn that the rare procedure would completely stop Jackson’s seizures that are coming from the left side of his brain and the hope is for the brain to reorganize and develop without any more disruption.
“Going into the surgery the doctors explained to us that he will most likely be paralyzed on the entire right side of his body after the procedure,” Hampton wrote the day after surgery. “Jackson started moving both of his legs today. This means that Jax was born this way and the right side of his brain has already learned how to compensate. This is truly the best news for baby boy!”
Jackson is now 6 months old and doctors tell Kaitlyn that he is expected to walk when he’s older. However, they believe he could face challenges with immunity and learning. He has therapy daily and his seizures are now down to 11 a day.
“He is now opening his hand more on his right side. He’s gaining strength in his right leg. That’s all from movement,” Cally Hampton, Jackson’s grandmother, told KTVZ. “He’s sitting up almost on his own – almost. And that comes from gaining strength in his spine and in his hips and in his neck.”
Kaitlyn said her son is doing well and she’s hopeful about his future.
“He’s such a happy baby. He’s very social. He loves people. He loves making friends. When he smiles, it feels almost non-stop,” she said.
