After having half of his brain removed in a medical procedure on Sept. 6, Chandler 18-month-old Cooper Nichols is seizure-free and recovering as expected.
“As a whole, he’s just doing so well,” Cooper’s mother Kyna Nichols said. “He’s happy and smiley and he’s doing really great.”
Cooper, who was diagnosed with infantile spasms at seven months old, seized nearly 100 times a day before the surgery.
“He went from hundreds of seizures to zero,” Nichols said. “If this wasn’t our family, I wouldn’t even believe this was possible, but we’re watching it happen so it’s pretty neat.”
Cooper’s seizures were more subtle than typical seizures. Pediatric Neurologist Shaun Hussain said that Cooper would slightly drop his head to the left side and have a slight movement of his left arm, but they would happen in clusters of multiple at a time.
“I think people outside the family, beyond the parents, would think that these are ordinary baby movements unless they saw the pattern,” Hussain said.
When Cooper was diagnosed with infantile spasms, he tried many medications,but there was no end to his seizures. After meeting with doctors at UCLA’s Mattel Children’s Hospital, Cooper’s parents made the decision to go forward with a hemispherectomy, removing the right side of his brain.
Because Cooper is under two years of age, Hussain said the left-side of Cooper’s brain should be able to reorganize itself and take over the functions of the right brain.
“Our hope is that we can offer a cure and have minimal effects from this surgery, but we don’t actually know what the ultimate outcome will be, but we’re hopeful for seizure freedom and a fairly normal development there after,” Hussain said.
Dr. Gary Mathern, who performed the surgery, said deciding to go forward with the surgery began with a risk-benefit assessment of Cooper’s situation. Mathern said that based on Cooper’s natural history, without surgical intervention he would likely have an IQ of 50, never walk, never talk and would not be able to recognize his parents.
Nichols said after the surgery, Mathern told her that he discovered the seizure activity in Cooper’s brain was much worse than he had originally thought. He told her medication would have never worked with the amount of seizure activity and brain damage that he found.
“Without this intervention, he would not have been well at all,” Nichols said. “This was really our only option so it really reiterated that we made the right decision to go forward with the surgery.”
The surgery will not come without side effects, however. Mathern said Cooper will likely not regain fine motor skills in his left side after the surgery. That being said, his IQ should range between 70-80 and he will be able to do most normal functions.
“That is usually one of the big issues that parents have to face is that they have to give their child a physical handicap in order to try to optimize their cognitive potential,” Mathern said.
Nichols said a week and a half after the surgery, Cooper started babbling and talking, something he had not done before. As for the possible side effects, she said she is confident in Cooper’s ability to overcome them.
“He does have some paralysis on the left side so there are some physical handicaps now that we’re hoping that with intense physical and occupational and speech therapy that he’ll get through those,” Nichols said.
Hussain said that this procedure, even with the side effects, can radically change the course of Cooper’s life. Without the procedure, he would face severe mental retardation and enduring weakness of the left side of his body.
“I don’t even look at it as a cure from epilepsy,” Hussain said. “It’s a way to potentially save Cooper from a terrible fate.”
Nichols said they were sent home almost a week early because Cooper was recovering so well. This came as a sign of relief to Nichols who has another child, Cooper’s twin sister Bentley who has Down Syndrome, and is expecting a third in three weeks.
“Now we’re just working with Cooper and hoping that he continues to recover and now we feel good,” Nichols said. “We’re back home and we can have the baby and all is right in our world right now.”