Left Brain, Right Brain: Faced with Child's Relentless Seizures, Parents Opt for Unthinkable Cure
Except for a slightly withered right arm and leg, Emily Driscoll looks and acts much like any other six-year-old. She loves to run around the house, chat up a storm, and read books with her parents. That she can do anything is a wonder, considering that she’s missing the entire left side of her brain. (Pictured left, the Driscolls. Photo by John Abbott.)
Seconds after birth, Emily suffered a catastrophic stroke, devastating her brain’s left hemisphere. The tissue was silent, except for the occasional burst of electrical impulses that served only to trigger an epileptic seizure. Over the next 18 months, Emily developed slowly—well behind her peers. Even more troubling, the seizures persisted, threatening the healthy half of her brain. “The seizures weren’t horrible,” says her mother, Annemarie. “But she would have 50 to 60 clusters a day.”
A Radical Solution
Emily’s neurologist tried one seizure medication after another, but to little avail. When he recommended more powerful drugs—with more powerful side effects—Annemarie and her husband, Pete, balked. Annemarie scoured the Internet for another remedy. She came across a procedure called a hemispherectomy, which quells intractable seizures limited to one side of the brain by disconnecting or removing the offending hemisphere. With understandable trepidation, the Driscolls made an appointment with Howard Weiner, MD, professor of neurosurgery and pediatrics at NYULMC, one of about a dozen surgeons in the US who specialize in this, the most radical of neurosurgeries.
“It’s a drastic solution,” Dr. Weiner admits. “But in cases like Emily’s, it’s the only option. Frequent seizures, even small ones, are associated with serious developmental and cognitive delays. Also, it’s really hard on the family, constantly living on an eggshell, wondering when the next big seizure and the next ER visit will be.”
Despite the risks, the Driscolls opted for surgery. “I’m a surgical nurse,” says Annemarie. “If you can fix something, you fix it.”
A Successful Procedure
The operation was performed on January 4, 2010. “I remember driving to the hospital the night before, thinking, ‘They’re going to take half my kid’s brain out.’” Annemarie recalls. “‘What kind of parent does something like this?’ ”
In a four-hour procedure, Dr. Weiner removed most of Emily’s left hemisphere, save for a small portion of the frontal and occipital lobes. “In most cases, we just disconnect the electrical connections between the brain’s two halves and try to preserve as much brain tissue as possible,” he explains. “This reduces complications, such as brain swelling and fluid buildup in the damaged hemisphere. In Emily’s case, most of the tissue had formed dangerous, fluid-filled cysts, so it was best to remove them.”
The seizures stopped immediately, never to return. Today, with the help of a variety of therapists, Emily is gradually catching up to her peers. She still has trouble with fine motor control of her right limbs, and she’s missing a portion of the visual field on her right side. Such deficits are typical of hemispherectomy patients and never fully heal, according to Dr. Weiner, who has performed dozens of these operations.
Nonetheless, the Driscolls are thrilled with Emily’s progress. “She’s a true joy,” says Annemarie. “She’s going to kindergarten in a couple of weeks. Who would have thought? We were told she may never even walk or talk. NYU Langone’s docs did a great job. It’s great to know that they are there in case she needs anything in the future.”
After a hemispherectomy, the future is hard to predict. “The younger the patient, the better the longterm outcome,” explains Dr. Weiner. “Young brains are more ‘plastic’—that is, more capable of reorganizing in response to injury.”
Meanwhile, the Driscolls can take some comfort in the story of Elena Del Peral of Ghent, New York. Twenty years ago, Del Peral suffered a stroke in utero, resulting in injuries similar to Emily’s. She underwent a hemispherectomy at NYU Langone at age six, also performed by Dr. Weiner. Afterward, she had one last seizure, and then they stopped. For years, she struggled in school, particularly in math and science. Then, during her sophomore year of high school, something happened. “I became smart,” she says. “I know that’s weird to say. But everything got easy for me, and I knew what I wanted to do in life.”
In 2012, Del Peral enrolled in college, eyeing a career in communications. A straight-A student, she made dean’s list her first two semesters.
None of her friends or teachers ever guesses what’s she been through, and she rarely tells them. Whenever a friend unwittingly kids her about having a “half-brained” idea, Del Peral has a good laugh. “That doesn’t bother me,” she says. “I’m smarter than half the people who say that to me.”
This story originally appeared in the March/April 2014 issue of NYULMC News & Views.