What Parents Need to Know About Meningitis
Bacterial meningitis -- with infection of the brain and spinal cord, and related blood poisoning -- is shocking in its effects. The disease can take the life of an active, healthy adolescent within 24 hours of diagnosis. Fortunately, bacterial meningitis is rare in the U.S. According to the Centers for Disease Control and Prevention, about 4,100 cases, including 500 deaths, occur yearly.
But what meningitis lacks in frequency, it makes up for in devastation. The majority of survivors recover without long-term effects. However, some survivors may lose limbs, suffer brain damage and face other lifelong consequences. The good news is safe and effective vaccines are available. Here, experts and people whose lives were forever changed by meningitis share their wisdom and stories.
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Even though he lost both feet and several fingers, spent several weeks in a drug-induced coma, had skin grafts over nearly half his body and almost died, Carl Buher, 27, a civil engineer in Seattle, considers himself one of the more fortunate victims of bacterial meningitis.
At the beginning of September 2003, Buher was a 14-year-old high-school freshman, involved in several team sports. One night after coming home from practice, Buher went to bed feeling unwell. He'd had a bad head cold that week and felt sick to his stomach.
"I had one of the worst nights of sleep I ever had," Buher says. "I was up all night being sick and vomiting and feeling nauseous. The next morning I stayed home from school and was just in and out of sleep all day." That afternoon, his sister realized something was really wrong. "She noticed I was getting these purple splotches, almost like a rash on my arms and legs, and got pretty scared," he says.
Skin rashes called petechiae or purpura can be a sign that meningitis bacteria have invaded the bloodstream. His sister didn't know that, but she called their parents, who rushed home to take Buher to their primary care physician. A spinal tap confirmed the diagnosis.
Buher was airlifted to Seattle Children's Hospital. "In the helicopter, my heart stopped three times," he says. "I was in a drug-induced coma at Children's, and they were able to pump me full of antibiotics and keep me alive for three weeks until I was kind of out of the worst part."
Eventually, he was transferred to Harborview Medical Center for trauma and burn-type care. He went through multiple surgeries, including amputation of his feet and extensive skin grafts to enable healing of areas where the skin had been severely scarred and damaged by the bacteria.
[See: Was That a Seizure?]
Meningitis draws public awareness when outbreaks occur on college campuses, such as the recent outbreak at Santa Clara University and earlier cases at the University of Oregon, Providence College and Princeton University.
Because meningitis can spread from person to person by close contact, such as kissing or coughing, people in community settings such as dorms and military barracks are at higher risk.
But more often, although less publicized, meningitis appears as a single, isolated case in a previously healthy person. Teens and young adults from 16 to 23 are at increased risk, as are infants under 1 year old, older adults and people with weakened immune systems.
Buher's case was not part of an epidemic or outbreak. "I was the only one who ended up getting it, which was pretty lucky," he says. "Not for me, obviously, but lucky that no one else was infected."
Vaccine Choices
A type of bacteria called meningococcus or Neisseria meningitidis is the leading cause of the most serious forms of meningitis. Of the multiple strains of N. meningitidis, five specific groups -- A, B, C, W and Y -- cause the most disease. At present, two types of vaccines are needed to cover all five groups.
To protect against A, C, W and Y, meningococcal conjugate vaccine is routinely recommend for adolescents ages 11 to 18, with the first dose at age 11 or 12 and a booster dose at 16.
In January 2015, the Food and Drug Administration approved a vaccine called Bexsero to prevent meningitis caused by group B bacteria, for use in people ages 10 through 25. The FDA approved Trumenba, another vaccine against group B, in late 2014.
For the highest level of protection against meningitis, teens should receive both types of vaccines, Nicole Basta, an assistant professor in the epidemiology and community health division of the University of Minnesota School of Public Health, wrote in an email.
Following Princeton's meningitis outbreak in 2013, Basta conducted a study measuring immunity levels among a group of students, some of whom had received the Bexsero vaccine because of the urgency of the situation.
This summer, parents should talk to teens about symptoms and the need to act quickly and seek help if they occur, Basta advises. "Symptoms include a stiff neck, rash, severe headache, fever and confusion," she says. "The specific symptoms that an individual experiences can vary significantly from person to person and can mimic the flu early on in the illness."
No vaccine offers 100 percent protection. In February, the KQED State of Health blog reported on a Santa Clara University student who had received both doses of Bexsero but was still sickened in the meningococcal disease outbreak.
Devastation
Eighteen years later, it never really gets easier for Lynn Bozof, president and founder of the National Meningitis Association. Her 20-year-old son Evan was a junior at Georgia Southwestern State University, where he was a premed honors student and pitcher on the baseball team. Although it was spring break, Evan had stayed on campus. His parents and younger brother were in Atlanta, about three hours away.
The phone calls started with Evan telling his mother he was skipping a game that day because he was nauseous and throwing up, his eyes hurt and he had a horrible headache. She suggested his roommate take him to the emergency room.
Next came a reassuring discussion with E.R. doctors, who said Evan had a "little virus" but would be fine. However, they didn't want to send him back to his dorm, so they would keep him in the hospital overnight. The couple asked whether they should come down but were told there was no need.
When Bozof called the next morning, the nurse told her Evan was too sick to come the phone, so she held it up to his ear. "I said, 'Evan, do you want Mom and Daddy to pick you up and take you home?'" she recalls. "He said yes."
But that wasn't to be. Within a half hour, as the family made arrangements to drive down, they received chilling news. "We got a call from the hospital saying that Evan had bacterial meningitis and had a 5 percent chance of survival," Bozof says.
She describes their drive of horror: "We stopped midway to the hospital to call to see if he was alive," she says. "It was one nightmare after another. It was my younger son asking me if there is life after death. It was trying to be strong for him; trying to process that my older son was dying."
Within an unthinkable 26 days, Evan had lost kidney and liver function. Because of gangrene, he had all four limbs amputated in an attempt to save his life. "He had 10 hours of grand mal seizures," his mother says. "Eventually the brain swelling herniated his brain stem. And they told us he was brain dead, and we had to make the most horrible decision to take him off life support." On April 20, 1998, Evan died of meningitis.
"My husband and I said, 'We can't let this happen to other families,'" Bozof recalls. "This is why I do what I do."
Vague Symptoms/Clear Choice
Infants and children are protected from meningitis by vaccinations for Haemophilus influenzae type b or Streptococcus pneumoniae, which are usually started at the age of 2 months, according to the schedule recommended by the CDC.
However, meningococcus is another significant cause of meningitis for which vaccination is still not universally recommended for all children, says Dr. Paul Lee, a pediatric infectious disease specialist at Winthrop-University Hospital in Mineola, New York.
Vague initial symptoms followed by a swift and ruthless assault mean that once a meningitis diagnosis is made, it's often too late, Lee says. "So you wake up; you feel off and you might have a headache and feel a little bit nauseous. You feel irritable, you're achy. A little loss of appetite -- are you going to run to the doctor for that?" he says. "But meningococcus is a medical nightmare. Let's say the symptoms start at midnight. By the next midnight, you could be dead. And that's how fast and devastating it is."
Why take a chance? "The bottom line would really be that meningitis kills, and the vaccinations have the potential to save lives, period," Lee says. "If meningitis doesn't kill you, it can lead to permanent brain damage. And if a vaccination has a chance of preventing that from happening, who wouldn't want that for themselves or their child?"
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Life After Meningitis
In February 2004, Buher was released from the hospital to recuperate with daily physical therapy at home. He returned to school full time in his sophomore year. And he graduated on time -- as class valedictorian -- with a 4.0 GPA. He used a wheelchair throughout high school as he slowly learned to walk again with his prostheses.
"It's one of those things where, cliché as it sounds, what doesn't kill you will make you stronger," says Buher, who speaks publicly about meningitis to raise awareness.
"I went on to Gonzaga University after high school," he continues. "Then I just kind of started to walk full time. About the first week of school, I met my now-wife in calculus class, and we dated throughout college. After we graduated, we both moved back home to the west side of the state and got married a couple years later. And we just bought our first home and moved into it last week."
Lisa Esposito is a Patient Advice reporter at U.S. News. You can follow her on Twitter, connect with her on LinkedIn or email her at lesposito@usnews.com.
