San Gabriel Valley Tribune




4-year-old Azusa boy in recovery after radical brain surgery

By Evelyn Barge, Staff Writer

Article Launched: 09/25/2008 01:19:05 PM PDT

4-year-old Aiden Waters of Azusa waits for his sensory therapy session to start on Sept. 16. Aiden underwent radical surgery

in late August to treat a rare neurological disorder called Sturge-Weber Syndrome. (Watchara Phomicinda / Staff)

One month after Aiden Waters underwent radical surgery to remove the damaged right hemisphere of his brain, the 4-year-old Azusa boy is already back in the routine of school and undergoing neurocognitive therapy.

"He, for the most part, came out the same boy that went into surgery," said his mother Rachel Waters. "We are so blessed."

Aiden underwent the hemispherectomy to put an end to seizures caused by a rare neurological disorder called Sturge-Weber Syndrome. Prior to his Aug. 21 brain surgery, he had already undergone an operation for glaucoma and 15 laser treatments to fade a deep purple port-wine stain that covered parts of his face.

Facial port-wine stains and glaucoma are common characteristics among individuals with the disorder, according to the Sturge-Weber Foundation. The stain is caused by an overabundance of blood vessels around the trigeminal nerve in the face, and abnormal blood vessels also form on the surface of the brain on the same side.

"Progressively, those blood vessels change and calcify," said Dr. Raman Sankar, head of pediatric neurology at Mattel Children's Hospital UCLA, where Aiden's surgery took place. "That whole side of the brain ends up shuttering up."

The disconnection and removal of the damaged hemisphere will allow the left side of Aiden's brain to function better, he said, and should significantly reduce or eliminate the occurrence of seizures.

And although doctors said it's still very early in the recovery process, Waters said Aiden has not had any seizures in the weeks following his surgery.

"The electrical activity produced by seizures is like disruptive noise," Sankar said. "The good half of your brain is trying to listen to Bach or Mozart or Bob Dylan, but the other side is giving you a loud hum or noise."

Now that Aiden is hopefully free from seizures, doctors and therapists have begun to work on developing his neurological processes.

In his classroom at the East San Gabriel Valley School in Covina, teachers engage him in sensory, physical and occupational therapy. Colorful toys that record and repeat his teacher's voice saying "Aiden" help him learn to recognize and respond to his name. He also practices bearing down on his left hand to keep the muscles from atrophying.

Outside the school, Aiden works with a feeding therapist to learn how to chew and swallow different textures.

With the surgery over, Waters said she feels a great sense of relief, but it's also the beginning of many new questions.

"What does the future hold now that he only has half a brain?" Waters said.

Doctors prepared her to expect some behavioral and personality changes in Aiden following the surgery, and she monitors him closely.

Where he once loved to be tickled, Aiden now dislikes the sensation and can become agitated by it, Waters said. At school, his teachers have noticed that some of his favorite activities now upset him, like finger painting with shaving cream.

But doctors said it's far too early in the recovery to tell if any of these changes will be lasting.

"We expect it to get better over time," said Dr. Gary W. Mathern, director of the pediatric epilepsy surgery program and pediatric neurosurgery program at Mattel Children's Hospital UCLA, who performed Aiden's hemispherectomy. "If he's not quite as interactive as he was pre-surgery, we do expect to see that at least come back to a sort of baseline."

In fact, the doctors at UCLA won't make their first major assessment of Aiden's recovery and brain function until six months after the surgery, Mathern said.

"We're still very much in the recovery phase," he said.

Waters said that while Aiden does occasionally seem more frustrated than before, he also appears to be more aware of his surroundings.  As his brain starts to form new connections that weren't there before, she  hopes that Aiden may one day be able to communicate through speech,  something he has been unable to do so far.

Overall, Waters said the recovery process is going smoother than she expected.

Aiden Waters, 4, of Azusa goes through a sensory therapy session at the East San Gabriel Valley School in Covina on Sept. 16. Aiden underwent radical brain surgery in late August to treat a rare neurological disorder called Sturge-Weber Syndrome. (Watchara Phomicinda / Staff)


"I know we're not out of the woods yet," she said, "but I have to keep focusing on all the progress he's made. I'm so thankful that he's come this far."

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