The two-and-a-half-hour drive from Galliano to Lafayette was very tense for Jeri Acosta and her husband Marty. Their son Robert had called at about 7:30 a.m. complaining of severe leg and groin pain, and Jeri had advised him to go to the student clinic at the University of Louisiana at Lafayette. A doctor sent him home with pain relievers for what he diagnosed as a pulled muscle. Within an hour, Robert's symptoms had expanded to vomiting and a severe headache. He went to the emergency room.
As they drove, Jeri got a phone call from the hospital. Robert had bacterial meningitis in his blood. When the Acostas arrived at the hospital, their usually healthy 20-year-old son had developed a rash and was dying.
"By that time (when the rash appears), the disease has progressed and death is imminent," Jeri says. "When we got there, they were working on him. He was on a respirator. He was so unrecognizable that I could not even comprehend that that was my child. All I could do was holler that his dad and I were there."
Robert said, "Mom, I love you," his last words to her. She sat by his hospital bed and hummed Bob Marley's "Redemption Song," a favorite of Robert's that he played when he was inducted into his high school's thespian club. He didn't say anything, but she saw a tear roll down his cheek and knew he had heard her.
"Within 10 minutes after we walked out of his room at 1:20 a.m. Jan. 27 (2006), they told us he had died," Jeri says.
Robert was the first of six young adults associated with the university who contracted meningitis in January and February of 2006. He was the first of two who died, but he was the only one who had the disease in his blood. The others had the type that invades the spinal fluid and fluid around the brain. Within 21 hours after he began feeling pain in his groin and leg, Robert was dead.
Jeri suffered another shock when she called the Centers for Disease Control in Atlanta to discuss her son's death. "When the doctor said, 'Ms. Acosta, did you know there is a vaccine for this?' I couldn't believe it." She soon learned she wasn't the only parent who was unaware of the vaccine.
"At Robert's funeral, there were so many parents ... who came up and said to us they didn't know about this." That prompted her to contact then-state Rep. Mike Strain, now the state Commissioner of Agriculture & Forestry, to sponsor a bill in the Louisiana Legislature requiring the vaccine for students enrolling in colleges in the state. It passed in 2006. Last year, she expanded the effort to require the vaccine for children entering sixth grade, since the CDC recommends all children 11-18 be vaccinated against meningitis. That legislation also passed, and the state has set up programs for children who are uninsured or underinsured to receive the vaccine through the Office of Public Health.
Meningococcal meningitis is a severe bacterial infection caused by five different strains of bacteria and affects about one in 100,000 people in the United States each year. It can be spread through kissing, coughing, sharing cigarettes or drinks, or close contact with someone who is infected. The two approved vaccines are about 90 percent effective against all but one of those bacteria. The disease also can be caused by a virus, but that form generally is much less severe and often goes away without treatment. In Louisiana, there have been 40 or fewer cases of meningitis reported each year from 2004 to 2006. The vaccine is required not because of the prevalence of the disease but its severity, says Dr. Fred Lopez, an expert in infectious diseases at the LSU Health Sciences Center and vice chair of its Department of Medicine.
"We always consider these to be severe infections," he says. "The issue is: Is it just in the spinal fluid, or the spinal fluid and the blood? We treat them in the same manner, aggressively and as quickly as possible to minimize death and/or complications. They just might involve more than one organ system. These are considered some of the most severe infections we can see."
Antibiotics are used to treat all forms of meningitis caused by bacteria, but it is important to know which type of bacteria is responsible in order to choose the right medications. This requires obtaining a sample of spinal fluid or blood and growing a culture of the invading bacteria to determine what type it is. In the meantime, however, Lopez says physicians will start the patient on an antibiotic regimen effective against the three most common types. One of the reasons is that once the patient begins to show symptoms, the disease spreads and progresses quickly.
"It oftentimes will start in the brain and just stay there," Lopez says. "Oftentimes, it will be the brain and blood. Once these organisms get in the blood, it bathes all the organs, and other sites become infected.
"Even though we may not always know the minute they present symptoms in the emergency room the type of bacteria, we treat the patients who have the presentation of meningitis with intravenous antibiotics that treat the most common ones. In my field of infectious diseases, this is an infectious disease emergency."
Although meningitis is not very common and some of its symptoms — headache, vomiting, fever — can mimic the flu, a stiff neck with the other symptoms is a clue for physicians. "That presentation gets any health care provider's attention," Lopez says. "It's not unknown, just because it's uncommon."
The lack of classic symptoms until his second trip to the emergency room likely is what delayed the correct diagnosis of Robert Acosta, whose first visit to the doctor was for severe groin and leg pain. It was not until an hour after he was sent home that he experienced vomiting and headache, which prompted him to seek further treatment.
One of Robert's best friends, Erick Greene, a promotions coordinator at House of Blues in New Orleans and a member of the band Enharmonic Souls, survived meningitis while a senior in high school in Cutoff in 2003, three years before Robert's death.
"It's a fluke kind of a thing," Greene says. "I was the only one in my whole school who had it. I don't know how I made it out. It's kind of a guilty thing that weighs on you."
Right before he got sick, Greene was being treated at Children's Hospital in New Orleans for an immune deficiency. After a treatment, he went home with a headache and backache. "I woke up that night with a pounding migraine, the worst I've ever had," he says. "I went into the bathroom and laid down on the floor. I passed out, and my dad found me the next morning. I couldn't walk because of the pressure on my spine. With me (the symptoms were) a migraine and a backache and feeling stiff. Nothing seemed to help and it got worse and worse. I had had the flu several times as a kid, and this was a totally different thing. "
Within 12 hours of the first symptoms, Greene was back at Children's Hospital in quarantine and receiving injections of antibiotics every half-hour. It took him two weeks of bed rest to get well and walk again, but he says he hasn't fully recovered.
"My memory is not what it was before I had meningitis," he says. "It became hard in school because things weren't sticking in my head like they used to. I have a lingering pressure that remains in my head and back. But I am lucky ... that the effects I have are not as extreme as some people's are."
Jeri Acosta works with the National Meningitis Association (NMA) as a Moms On Meningitis. She raises awareness about the disease and the vaccine that can prevent it, and she has seen firsthand what aggressive meningitis can do. "I have met kids who have survived this disease with no arms and no legs," she says. "What happens is that 20 percent of survivors have long-term disabilities, limb amputations, brain damage." In the outbreak that took Robert's life, six people were infected, two died and one still suffers with neurological problems, she says.
Lopez says those problems result because the invasive bacteria cause complications in the blood such as clotting, necrosis of the skin and tissues. "About 15 percent of patients will die from meningococcal disease, whether in the blood or in the spinal fluid," he says. "Of those who survive, 15 percent may have loss of limbs, deafness, mental disorders and seizures."
Those lasting effects, and the mortality rate, are why the CDC recommends a vaccination for 11-18-year-olds; people over 65; college students living in dorms; people working in microbiology labs who routinely work with the bacteria; military recruits; people traveling where the disease is endemic; and people with certain immune disorders — even though meningococcal disease is not all that common. About 10 percent of the population has the bacteria that cause meningitis in their nasal passages, but very few develop invasive disease, Lopez says. Even if they don't get sick, however, they can pass the disease to others.
"The CDC has written new guidelines for approved immunizations in the last few years to push health care providers and patients to protect themselves," he says. "We should be striking for 100 percent utilization of vaccination for our patients. It's readily available. There are very few reasons not to receive this vaccine."
Some people don't get it for religious or personal reasons; others may be allergic to some component of the vaccine. People shouldn't receive the vaccine while ill with another disease, and people who have Guillain-Barre Syndrome should consult with their physician before receiving it.
Even if you've had the vaccine, Lopez says, you should go to an emergency room right away if you experience the triad of symptoms common to meningitis — stiff neck, headache and vomiting — because it is not effective in 10 percent of cases due to vaccine failure or cases in which the meningitis is caused by bacteria not covered by the immunization.
Jeri Acosta can't say enough how important it is to get the vaccine. She holds awareness and fundraising events for the NMA and is now working on a grant to distribute to every school in Louisiana a video that tells her family's story.
"No other disease I've heard about can take a healthy person down in seconds — and there is nothing you can do about it," she says.
"It was unlike anything I've ever seen. I never thought when our son called us (to say he was ill) that we would be burying Robert a few days later. I tell parents, 'If you don't think it's important, come to the cemetery with me.'"