December 25, 2011
Dylan Catania turns 2 next month. He likes pasta with red sauce, playing catch or wrestling with his dad, sitting on slick leather chairs at Starbucks to greet strangers and holding his breath underwater. He does not like baby food, sitting in his car seat or taking naps.
Video: Dylan's journey
When he is really, really happy, Dylan likes to sit on the ground, crack a smile exposing his fledgling teeth and spin like a top.
The faint scar on his right temple is invisible under a cap of downy brown hair. He was born with half of his brain enlarged and malformed, a disorder known as hemimegalencephaly that occurs in fewer than two dozen births a year.
When he was nearly 3 months old, neurosurgeons at UCLA severed the right hemisphere of Dylan's brain from the left in a seven-hour operation, radical surgery to stop him from suffering as many as a hundred seizures each day.
Neurologists who see him now, scooting across the floor propelled by his right hand, recognize the telltale "hemi scoot." His family and friends see a determined boy who has grown not only stronger but more trusting, empathetic and brave.
He can say more than two dozen words. He does not cry for his mother at the preschool near his family's home in Beverly Glen, but if another child wails, he joins in solidarity. He favors classical music and anything Elmo, waving his right hand to the beat, but has been known to watch in awe as his sister and cousins groove along to their Wii. He has yet to make peace with his left side, slightly paralyzed by the surgery, but if his parents ask nicely, he will kiss his left hand, known as "lefty."
Quieting Dylan's brain
From the Archive:
The right side of Dylan's brain was triggering seizures that worsened steadily after his birth in January 2010, even when he was heavily medicated. Specialists at UCLA recommended operating as soon as possible, before the seizures could damage Dylan's brain. But they warned that the surgery might paralyze Dylan's left side and still not stop his seizures.
The Catanias chose to try to save Dylan's mind. Still, they worried if they were doing the right thing for their infant son. The Times documented their decision to operate and Dylan's long recovery in an article that was published last Christmas Day.
Before the surgery, Ellen and Jeff Catania had lived on the edge. Dylan's seizures grew increasingly frequent. His tiny body would tense, arms clenched, and he would wail. When it was over, they would give him a cocktail of anti-seizure drugs that left him sluggish, eyelids at half-mast. They kept him close by, never moving him into his nursery.
More than a year and a half after the operation, Dylan has not suffered another seizure. He still has trouble sleeping through the night (Elmo helps) and beds down in his parents' room. But he stopped taking his anti-seizure medication months ago. His brown eyes, once hooded, are now open wide, taking in the world.
"If you ask him to press a button, he does it. He knows exactly what you're talking about," Jeff Catania, 61, says. "He lays down when asked, and when we go to leave the house, he lifts up his legs to put on his shoes."
To stop seizures that cannot be controlled by medication, doctors at UCLA use a radical surgery that removes deep brain-tissue structures to isolate areas generating the seizures. Without surgery, Dylan Catania's rare disorder, known as hemimegalencephaly, could have left him severely retarded. Here's a look at how surgeons used the procedure for Dylan:
Sources: Gary W. Mathern, M.D.; The CIBA Collection of Medical Illustrations. Graphics reporting by Tom Reinken and Paul Duginski
Graphics by Paul Duginski, interactivity by Itzu Chen, Los Angeles Times
Dylan's right arm is so strong, when they play catch, he slings the ball over his father's head.
"I don't underestimate him anymore," Jeff Catania says. "So I give back a little bit."
The Catanias do not measure their son's progress in the typical childhood milestones. Doctors say Dylan's development is delayed but that he is making good progress.
"He'll need support and all the things that go with it, but he's already achieving a level of activity that we would not have expected if we had not gotten seizure control," says Dr. Gary Mathern, the UCLA neurosurgeon who operated on Dylan. "He's already beating expectations."
Mathern is working with the Catanias and other parents through the nonprofit Brain Recovery Project to develop therapies for children who have the same surgery as Dylan.
The Catanias, who both work as fundraisers, still have a mountain of medical bills from Dylan's care. They just learned that he will need surgery in order to correct the crossing in his right eye. Ellen Catania, 48, sits up at night reading stories on the Internet about other children who had Dylan's surgery.
"Some go all the way to 15 and have a seizure," she says, grimacing. "You feel so joyful for every day with him, but then you still worry about his future."
His pediatric neurologist, Dr. Raman Sankar, said there is no guarantee that Dylan will remain seizure-free. But at a time when his brain is rapidly developing, stopping the seizures has given Dylan's mind space to grow, Sankar said.
"I wanted him to be able to make his own decisions, and he does," Jeff Catania said as he watched Dylan repeatedly punching a button to activate an electronic Santa Claus set up next to the tree in their living room.
Dylan's 11 year-old sister, Isabella, rolled her eyes as Santa danced and sang for the umpteenth time.
"He sure knows a lot of ways to say no!" she said as Dylan shot her a grin and began spinning.
Archive: A journey of risk, hope Copyright © 2014, Los Angeles Times