Teen survives disease that can kill or maim in hours

Tuesday, November 19, 2002

SELLERSVILLE, Pa. -- It seemed as though Adam Bencsik had the flu bug when he left his friends early and headed home to bed.

But in the middle of the night, things got strange: Adam's fingernails and toenails started turning purple, and purple splotches that looked like tiny bruises broke out on his skin.

Kathy and Greg Bencsik took their 15-year-old son to the local hospital, and soon he was on a helicopter to Children's Hospital of Philadelphia.

Adam had meningococcal disease, a bacterial infection that can attack the body with a vengeance. For the next two weeks, his parents didn't know whether he would live or die.

"It was like a roller coaster," Mrs. Bencsik recalled of their ordeal six years ago. "One minute the doctor would take us aside and say, 'This looks good.' Another time things would be worse."

Adam lived, but at a price: Both his legs and much of his hands developed gangrene and had to be amputated, and he also lost a chunk of his shoulder.

"... trying to believe that Adam without all his parts is better than no Adam," Mr. Bencsik wrote in a tiny green notebook that captured his thoughts while Adam lay in intensive care. "How would I react if I got very sick one day and woke up with no feet or hands?"

Almost melodramatic

Stories of meningococcal disease's swift assault seem almost melodramatic.

"It's so fast you can have a child perfectly well one minute and dead six hours later," said Paul Offit, a national expert and chief of infectious diseases at Children's Hospital.

Of the 3,000 people who get the bacterial infection each year in the United States, 10 to 13 percent die.

"That's despite good medical care," said Nancy Rosenstein, a medical epidemiologist at the U.S. Centers for Disease Control and Prevention.

And the disease has another devastating side: It maims as well as kills.

Among the survivors, 10 to 15 percent end up with some life-altering disability -- brain damage, deafness, a loss of toes, fingers, arms or legs.

For families that have made it through the life-or-death phase of the illness, word that their loved one will suffer a permanent aftereffect can be devastating.

Like many families, the Bencsiks knew nothing about meningococcal disease when the term -- often inaccurately called meningitis -- suddenly became central to their world.

Young children are at highest risk for the bacterial disease -- by adulthood, most people have developed immunity.

The culprit is a microbe called "Neisseria meningitidis. The bacterium lives harmlessly in the throats and nasal passages of up to a fifth of the population at any given time; the problem arises when it occasionally infiltrates the body. The bacterial invasion can cause two conditions: meningococcal meningitis, an inflammation of the membranes covering the brain and spinal cord, or a bloodstream infection called meningococcemia.

In its severest form, the bloodstream infection can quickly overwhelm the body, causing septic shock and death within hours. When the bacteria invade the bloodstream, they unleash a flood of toxins that trigger a furious immune response.

'Cascade of events'

The infection "sets up a cascade of events where the immune system actually becomes hyperactive, or overreactive," said Louis Bell, chief of general pediatrics at Children's Hospital. "The body is thrown out of whack."

The effects are many. Blood vessels leak. Clots form. The heart doesn't pump effectively, and blood pressure drops. Circulation diminishes, cutting off vital blood flow to the limbs. Major organs begin to fail.

While penicillin is effective against the bacteria, it doesn't halt the chain reaction already in motion. Intensive-care efforts are aimed at sustaining the patient while the immune reaction runs its course.

Because time is of the essence, beginning treatment as quickly as possible is crucial. But the early symptoms of meningococcal disease often look like nothing out of the ordinary.

"The flu was going around, and everyone was sick," recalled Adam, now 22. "I felt sort of tired, and my stomach hurt." It was the night before Easter Sunday 1996, and Adam, a 10th-grader at Pennridge High School and the middle of three boys, went to bed around 8. He woke up vomiting, and within hours was in intensive care.

"We could only focus on keeping him alive," said Mrs. Bencsik. As the days passed, it became obvious that the tissue in his legs and hands was dead.

When Adam learned he would lose his legs and most of his hands, he wanted to know two things: Could he play baseball? And could he play the guitar?

'Don't worry'

He ended up having five surgeries, including skin grafts. After two months at Children's, he spent a month in rehabilitation therapy at Alfred I. duPont Hospital for Children in Wilmington, Del.

Adam's parents took their cues from their son. "Don't worry; I'll get through it," he told them. His humor cheered the whole family.

"It's pretty bad when the highlight of your day is having your blood-pressure cuff changed from one arm to another," he said. "I need to get out more." He was home in time to begin his junior year.

Every April, when the anniversary of Adam's sickness rolls around, Greg Bencsik feels himself reliving the horror.

Adam tells his dad to "get over it." He is now a senior at Edinboro University of Pennsylvania, near Erie. He is studying public relations and wants to work for a professional sports team.

After graduation, he plans to move to Phoenix, where there is a wheelchair team he'd like to play on. He is engaged to a young woman he began dating after his illness, and they are planning a September wedding.

Adam says that sometimes, when he's playing basketball, he thinks it would be nice to have legs again. Other than that, he doesn't spend time thinking how things might have turned out differently.

"It's not like I have a bad life or anything," he said.

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