Saturday, April 12, 2008

Toddler fights rare neurological disorder following extreme surgery

He can recite his ABCs, count to 20 and wants to know the "why" behind almost everything. But some things don't come easy for 3 1/2-year-old Magiting Mina. Like opening and closing his left hand or wiggling the toes on his left foot.

The Lake Hopatcong toddler, who goes by the nickname "Kiko," was born with a rare neurological disorder, making the right half of his brain abnormally larger than the left. The imbalance caused frequent and violent seizures during the first two years of his life.

That's no longer the case. Eighteen months ago, doctors removed the right half of Kiko's brain -- where the seizures originated -- during a five-hour operation at the Cleveland Clinic in Ohio.
While it sounds extreme, the surgery -- known as a hemispherectomy -- has become more common in recent years, especially among children. After the damaged side of the brain is removed, the healthy side gradually takes over some of the lost functions and the void created by the surgery fills with fluid.

"He really was one of the kids who flew right through the operation without really batting an eye," said William Bingaman, the pediatric neurosurgeon who performed the procedure. "He certainly is doing quite well from a cognitive standpoint."

Bingaman, who has performed about 300 of the operations since 1996, said some children who undergo the surgery attend college and live remarkably normal lives, while others are left with physical and cognitive problems.

Kiko does have some physical limitations resembling those of a stroke victim, mostly left-side weakness, which he exhibited even before the right side of his brain was removed. He also has diminished peripheral vision in both eyes.

"These kids may turn out rather normal, but they're not going to be professional athletes or something that requires both hands for manual dexterity," said George Jallo, associate professor of pediatrics and neurosurgery at the Johns Hopkins Children's Center in Baltimore, who has performed similar surgeries.

Kiko is enrolled in a preschool for the disabled and attends weekly outpatient therapy sessions at Children's Specialized Hospital in Mountainside. There he engages in exercises to strengthen his left arm and leg, which he tends to neglect.

The bubbly toddler is cooperative and at one point even reminds physical therapist Adrienne Darpino about the "left-side rules" before he ascends a ladder leading to a sliding board. In a few minutes, he is ready to move on.

"We are going to do something else?" he eagerly asks.

Soon he is playing soccer, with his therapist encouraging him to use his left foot to kick a small red ball.

"I win," he shouts, as the ball rolls across the floor.

THE ULTIMATE SURGERY Kiko's disorder -- called hemimegalencephaly -- wasn't apparent until he was nearly seven months old. That's when he had his first seizure, which was marked by continuous blinking and uncontrollable drooling.

"From the first moment the seizures started, he would have them every single day," recalled his mother, Lina Mina, 42, a nurse who hasn't worked since 2005 because of her son's illness.
Kiko began taking anti-seizure medication, but the convulsions continued and even worsened, delaying his speech and impeding his ability to walk. Doctors at Morgan Stanley Children's Hospital of Columbia Presbyterian in New York performed two surgeries to separate the right side of Kiko's brain from the left, in hopes the seizures would stop.

They did for a while, but soon returned.

"He would drop his head and slump down almost to the floor. Sometimes, if he was sitting, his head would end up banging against his toys," said Lina. She and her husband, Joseph, also have a 10-year-old son, Dax.

The Minas, after consulting with doctors and researching their son's disorder, decided to go for the ultimate surgery -- having the right side of Kiko's brain removed. The operation took place in August 2006.

"Our worry was his cognitive ability, but he came out of surgery breathing on his own and could even call his brother's name," his mother said. "It was like magic."

Cigdem Akman, a pediatric neurologist at Columbia Presbyterian, said the boy's "cognitive function is quite impressive."

"He understands, can follow instructions, you really wouldn't think he went through such a big surgery," said Akman, who referred Kiko to the Cleveland Clinic.

There are times when Kiko is playing and suddenly stops, with a blank stare on his face. After a few moments, he seems fine. Bingaman said there is no clinical evidence to suggest that what Kiko is experiencing is an actual seizure.

"We're not quite sure what these spells are, but they usually go away (with time)," he said.
One thing appears certain, however, Kiko won't be slowed down by anything.

The Children's Miracle Network, the alliance of hospitals to which Children's Specialized Hospital belongs, recently selected him to represent New Jersey in a national program that honors children who have overcome severe medical challenges.

Last month, Kiko and his family visited the White House, where he posed for pictures with President Bush. He also hung out with Miss America 2008, Kirsten Haglund of Michigan. There also was a visit to Disney World, where he met and danced with Mickey and Minnie.

The staff at Children's Specialized recently welcomed Kiko home with a party, complete with a cake, colorful balloons and a commemorative collage of his trip.

"I'm Kiko. I have my medal," he said happily, as he playfully circled a room full of hospital well-wishers, showing off the gold medal around his neck.

Soon it was time for his favorite sandwich, ham and cheese, and afterward, a piece of cake.
"Umm, good!" Kiko said as he dug in with a fork.


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