Meningitis immunization
Vaccine called no-risk, but it’s not required for schoolchildren in Arkansas.
In the morning hours of March 28, 2007, Rick Haygood, 21, wasn’t sure what was happening. His friend, 18-year-old North Little Rock native Allison Shaw, had just collapsed in the parking lot of Baton Rouge’s Ochsner Medical Center. He hoisted her up and carried her inside, where a surgical-suited mob whisked her to a room, ripped open the back of her shirt and prepped her for a spinal tap. Just as Shaw feebly protested — “Wait, don’t those hurt?” — a nurse barked at Haygood to get out.
For Haygood and Shaw, this was the second Ochsner visit of the day. The first time, Shaw was nauseated and complained of a migraine. The pair were ushered to a tiny room and provided a paper bucket for Shaw to throw up in. It took about 10 hours for the on-call doctor to see her, prescribe anti-nausea pills and send her back to the apartment she was sharing with three friends.
A few hours later, the medicine wasn’t working, and Shaw had developed purple bruises on her arms and legs. She woke Haygood and asked him to take her back to the emergency room.
Now the doctor was calling it meningitis, a word that meant nothing to Haygood. All he knew was, Shaw came to Baton Rouge for spring break fun, and she was dying behind a door that, because he isn’t family, he couldn’t enter.
VIRAL VS. BACTERIAL
According to Dr. Jose Romero, an infectious disease specialist with Arkansas Children’s Hospital, several standard vaccines guard against strains of meningitis. But the meningococcal vaccine, which prevents a dangerous form of bacterial meningitis, isn’t approved for babies, nor is it required before attending public schools in Arkansas.
The national Centers for Disease Control and Prevention recommends that children receive the meningococcal vaccine at 11, with a booster at age 16. Romero says the vaccine is risk-free, but even so, some pediatricians never mention it.
Meningitis, or an infection of the meningeal sac surrounding the central nervous system, is most commonly
caused by a virus and transmitted via fecal matter. “Because little kids are not hygienically careful, they spread it around,” Romero says.
He emphasizes the importance of hand-washing, but adds that “viral meningitis is largely benign. Many adults think they have the flu or sinusitis.” It may briefly land small children in the hospital, but it lacks the long-term complications associated with bacterial meningitis — among them cognitive disability, nerve damage, paralysis, seizures and loss of hearing, sight and/or limbs.
“Bacterial meningitis, chances are you can recover well if you get treated quickly enough,” Romero says. “If you’re not treated, there’s a high risk of dying from the disease.” But because the symptoms — headache, fever, muscles aches, confusion and a stiff neck — resemble those of the flu, it’s easy to misdiagnose.
Shaw’s purple rash isn’t present with every case of bacterial meningitis. If it is present, it signifies an advanced state of the disease.
DOWNHILL FAST
Back in North Little Rock, Bliss Jones, Shaw’s mother, assumed that her daughter had food poisoning. She advised the emergency room visits, but only because Shaw “was out of state with other teenagers, and they’re not really going to do mommy duty.” At the most, she thought Shaw would receive an IV to ward off dehydration.
Around 8 a.m., an Ochsner nurse called to let her know that her daughter had been given a spinal tap, after which she’d had a seizure and a stroke.
Jones bundled her son, Alex Jones, 11, into her van and sped off, averaging about 90 on the interstate. Around Memphis, she received another call, informing her that Shaw had tested positive for meningococcal meningitis. Jones had known only one person with the disease, a high school classmate who survived but had both legs amputated.
Hospital staff called every half hour. One doctor said tersely, “She’s going downhill fast.”
Shaw’s stomach filled with blood and had to be pumped. Her organs started shutting down. She was placed on life support. Between Memphis and Jackson, Miss., Jones realized that doctors were keeping her daughter alive to say goodbye.
SPRING BREAK ADVENTURE
Five days earlier, Shaw had been a healthy senior at North Little Rock High School. She was an honors student who taught tap classes, performed at Arkansas Repertory Theatre and held a part-time job at the Lakeview 8 theater. She had driven to Baton Rouge to visit friends, and they’d seen a movie, gone swimming and eaten Chinese food. They were planning to head to New Orleans, but then Shaw had started throwing up.
She showered, thinking it would make her feel better. But when she tried to blow-dry her hair, her arms were too heavy to lift. It was this odd symptom that spawned her first visit to the emergency room.
WHO, WHAT, WHEN, WHERE
“You get it from yourself, in a way,” says Dr. Jeremy Bariola, with University of Arkansas for Medical Sciences. “There’s bacteria in the back of your throat, and if it gets across the mucosal barrier and invades your bloodstream, it can travel to your brain, and you can develop meningitis.”
But some bacteria, such as Neisseria, which causes meningococcal disease, can be transmitted person to person. Kissing, coughing, sneezing and sharing cigarettes, cups and utensils are all culprits.
According to the CDC, bacterial meningitis has a 12 percent fatality rate. The risk is greatest among infants and people in community living situations, such as military barracks or college dorms. A recent spike in cases among gay men in New York has prompted the city Department of Health to fund a vaccine drive in nightclubs. With the vaccine, meningococcal disease is nearly 100 percent preventable.
Twenty-three states require the vaccine for college or high school students, but Arkansas law merely stipulates that incoming college students receive information about the disease. Since 2007, there have been at least 104 cases of bacterial meningitis in Arkansas, according to Dr. Gary Wheeler of the state Department of Health. In 2011, six Arkansans died of bacterial meningitis. That number jumped to nine in 2012 and included an 18-year-old student at Northwest Arkansas Community College in Bentonville.
The incubation period is about two weeks, which means Shaw could have contracted meningococcal disease at a high school speech tournament in Fort Smith. Her family, tournament roommates and Baton Rouge friends were all prescribed preventive antibiotics.
NO EYE CONTACT
Near Jackson, Jones’ phone died. She stopped at a gas station and bought a car charger. Around 5 p.m., she raced through the Ochsner parking lot, Alex in tow.
Jones has plenty of experience with hospitals, but before, it always had to do with Alex, who is disabled. When she glimpsed her daughter through the intensive care unit observation window, her knees buckled. Shaw was in a coma, her skin gray-hued, her muscular frame motionless beneath tubes and machines. For Jones, everything blurred and then came into sharp, relentless focus.
She scrubbed up, put on a surgical suit and went in: “I held onto her hand and I prayed, God, let her live.”
But the doctor wouldn’t make eye contact, and Jones knew what that meant. Shaw had a 10 percent chance of making it through the night, she was told. If her daughter lived, she would be mentally and physically altered.
That night, Shaw’s heart was restarted with adrenaline twice. But the next morning, she was still alive, and Jones thought her color looked better.
Five days later, Shaw opened her eyes and squeezed her parents’ hands. But she could squeeze with her right hand only. The left side of her body was paralyzed from the stroke.
“I asked the nurse if I could use the restroom … so they went to pick me up, and I remember looking down and realizing my feet were folded in a strange way. My left foot, I couldn’t move it, and it was the most confusing thing,” Shaw recalls, six years later.
There was something else that worried Jones, too. Shaw was using simple words and a slurred, baby voice. “You could tell there had been some kind of brain event. She seemed like she’d reverted to some earlier self.”
Shaw would be at Ochsner another five days.
HOMECOMING
Shaw was transported to Arkansas Children’s Hospital on a cold, windy Good Friday. She was welcomed by nearly 100 classmates, who lined the roads and hospital halls dressed in her favorite color, lime green, and holding green balloons.
She spent a second week in the hospital and 12 more struggling through outpatient physical and occupational therapy. She had to learn to walk and drive all over again.
She never returned to high school classes, but she attended her prom and graduation with a cane. And while her intellect was intact — the reversion proved to be temporary — she couldn’t remember her childhood or recognize people she had known for years.
“I was a theater person. I went from being able to read a script twice and have my lines memorized to not being able to remember anything,” Shaw says.
Because she didn’t want to forfeit a full academic scholarship to Hendrix College, Shaw left for college five months after being diagnosed. But the experience was frustrating and exhausting. She was no longer able to convert shortterm memory to long-term, rendering course work nearly impossible.
She moved back in with Jones, and the pair fought constantly.
“She, at one point, remarked to me, ‘It’s almost like living with a stranger. I really don’t know you.’ It was devastating, because she was my best friend,” Jones says. “She was three months old when her father and I split up, so it was she and I to conquer the world.”
Three years ago, Jones found some of Shaw’s childhood T-shirts in the garage and made a quilt from them. “Christmas Eve she opened it, and she loved on that quilt. She kept touching it and going, I remember that, I remember that now. There wasn’t a dry eye in the house,” Jones says.
2013
Shaw is 24, with big, aqua eyes and dramatic hand gestures. She washes her hands obsessively and will never again wear black nail polish, because when she was sick, her painted toenails looked like gangrene to her mother. She peppers her conversation with references to her “stroke foot” (her left foot remains numb and occasionally causes her to trip) and her “meningitis brain” (when she can’t think of a certain word). But she has recovered almost full function of her left side, and there’s nothing in her appearance or behavior that betrays her survivor status.
“You Google ‘meningitis,’ and you get all these pictures of people without legs,” she says. “I’m incredibly lucky.”
Still, her life is irrevocably altered: “I started dancing at 7. I love musical theater, so that was the plan … I wanted to be on the stage.”
Tap-dancing is out of the question. “It’s little things now … I have to pick up my leg with my hands and put it into my pants,” she says. She lost all vision in one eye and some vision in the other, which means driving at night is problematic.
But she has her own apartment in Maumelle, enjoys being a co-manager at the The Bridal Cottage, has done some modeling and volunteers with youths at her church.
Any chance she gets, she encourages people to get the meningococcal vaccine. She has even shared her story with a national campaign called Voices of Meningitis. “I don’t think bad things happen for a reason, but I think you can take bad things that happen to you and make good things happen from it,” she says.
She remembers her mother first telling her she had meningitis. “And my response was, what’s that?”
This is why she has a horseshoe-shape insignia tattooed over her left thumb, representing the National Meningitis Association: “Obviously, I want people to ask me about it.”
And one time, as she went through the Taco Bueno drive-through, an employee did. Shaw told her she survived meningitis, and the young woman said, “Oh my gosh! My best friend in high school died from meningitis.”
Shaw said, “Well, did you get vaccinated?”
When the woman shook her head no, Shaw said, “Do it for your friend.”