Patient Success Stories
So Special: Children’s Specialists Give Lane a Second Lease on Life
On
Sept. 23,
1996, Ron
and Sue Hocker
of Bedford,
Pa., welcomed
their son,
Lane, into
the world.
Sue had a
normal delivery
and Lane looked
perfect. And
then, even
before they
could leave
the delivery
room, Lane
experienced
his first
seizure. It
was the first
of thousands
of seizures
the Hockers
would witness
and it propelled
them down
a path filled
with fatigue,
frustration
and, most
of all, fear.
Within 24 hours, doctors transferred Lane to a larger hospital that was better equipped to manage his seizures. There, Lane had a series of MRIs1, CT scans2 and EEGs3 . The test results showed that the left half of Lane's brain never developed correctly, which was causing his seizures. For eight weeks, doctors treated Lane with a variety of drugs to try to control his now-constant seizures, but nothing worked.
"The combination of drugs that the doctors were using kept Lane's seizures under control for about four hours and then they would start up again just as bad as ever," says Ron. "It was heartbreaking for Sue and me to watch Lane suffer so much, and it was frustrating because he only got worse."
Finally, the neurologists suggested he might be a candidate for a surgical procedure called a hemispherectomy that would remove the part of his brain that was causing the seizures. The surgery involved several risks, including severe bleeding, infection, hydrocephalus (an accumulation of fluid under the skull) and temporary or permanent paralysis. Although they were frightened, Ron and Sue decided to pursue the surgery.
"The thought of someone removing part of our son's brain scared us to death," says Ron. "But the doctors thought it was his best chance to live a productive life. Without the surgery, Lane would have to spend the rest of his life on medications that made him lethargic and unable to do anything but sleep. To us, the potential rewards far outweighed the risks."
It was at that time that the Hockers were referred to Patricia Crumrine, MD, a pediatric neurologist at Children's Hospital of Pittsburgh. Because Lane was still unstable, Children's Transport Team was called to transfer him to the Pediatric Intensive Care Unit (PICU).
"Lane's case is very rare," says Dr. Crumrine. "We only see two to three children each year with conditions as severe as his. Usually, the area of the brain that is causing the seizures is much smaller, and, most times, we can control the seizures with medication. However, with Lane, that wasn't the case."
Lane remained in the PICU at Children's, and Dr. Crumrine continued to try to control his seizures as best she could to give Lane's brain the opportunity to develop a little further before the surgery. Then, on December 31, 1996, P. David Adelson, MD, a pediatric neurosurgeon at Children's, performed a functional hemispherectomy and removed a portion of the left side of Lane's brain. At just 3 months old, Lane is one of the youngest children ever to undergo a hemispherectomy.
The surgery took 11 hours. When it was over, Lane was seizure-free. Within two weeks, Lane was transferred to The Children's Institute so he could start his rehabilitation. Following a week of therapy the whole family went home to stay.
Unfortunately, the Hockers weren't home long. Just five months after the surgery, Lane's seizures came back with a vengeance.
"Lane was doing fine, and then, out of the blue, his seizures started up again like they had never left," says Sue. "At the first sign the seizures had come back, we called Dr. Crumrine and Dr. Adelson and we rushed him back to Children's."
Within a week, Lane was back in the operating room. This time, Dr. Adelson performed an anatomical hemispherectomy and removed the remaining portion of the left side of Lane's brain. Once again, Lane came out of the operating room seizure free and went home within a week.
After a few days at home, Sue noticed that Lane was acting strangely. He was hanging his head to one side and he was a lot fussier than normal. A phone call to Dr. Adelson resulted in another visit to Children's.
Lane had developed hydrocephalus, and fluid was building up between his skull and his scalp. To relieve the pressure and drain the fluid, Dr. Adelson placed a shunt under Lane's scalp.
Today, Lane still has the shunt, although it's hidden well beneath his bright blonde hair. He has limited use of his right hand and leg, but he is learning to talk and walk on his own and he just started preschool this fall-all things he never would have done without the surgery.
"We're so grateful that we met Dr. Crumrine and Dr. Adelson," say Ron and Sue. "They've given Lane the opportunity to do much more than he ever would have without his surgery. While Lane will probably always lag behind other children his age, it doesn't matter to us. We cherish every achievement he makes, no matter how small it seems. The fact that Lane is here with us and we're able to spend time together as a family is all that matters and what makes every single day so special."
Footnotes
1 Magnetic resonance imaging provides physicians with three-dimensional images of the body.
2 Computerized tomography enables doctors to get a close look at cross-sections of the body.
3 Electroencephalograms measure the electrical currents created in the brain.
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