Brian and Jen Sharpe of Kitchener, Ontario, did not know much about meningitis B before becoming parents—only what they occasionally heard on the news. They did not know that the bacteria that causes meningitis B can be spread easily through everyday behaviours such as coughing, sneezing, sharing drinks and utensils, kissing or close contact. They also did not know that five main groups of bacteria cause the majority of invasive meningococcal disease in Canada, or that no single vaccine protects against all five groups, so multiple vaccines are needed. But then, their beautiful daughter Alexis was born in November 2010, and meningitis B made a sudden and terrifying entrance into their lives.
When Alexis was five-and-a-half months old, she developed a persistent, high fever. The Sharpes did what any mom and dad would do, they drove their baby to the ER not just once, but twice, with doctors assuring them each time it was probably “just a virus she would get over.” Unfortunately, Alexis’ condition was far worse than a passing flu. After being sent home the second time, Jen observed additional worrying symptoms—grunting, sweating and trouble waking up—and the family rushed their baby back to the hospital via ambulance. “The paramedics were able to rouse her, but it was clear something was wrong,” Jen recalls. At the hospital, staff noticed a rash and swollen fontanelle (the soft spot area on an infant’s skull); at that point, doctors and nurses were on high alert.
“They took us out of the room so they could perform a spinal tap. We were terrified. They told us it would be a couple of days before we knew for sure what we were dealing with,” says Jen. The doctors already suspected meningitis and thankfully started intravenous antibiotics right away. When the test results came back, the diagnosis of meningitis B was confirmed. Alexis would remain in hospital receiving treatment for twenty-seven days. “We’ve learned that early symptoms can be hard to notice because they begin mildly, like those of a cold or the flu. It can be even harder to notice these symptoms in babies, and they may not appear at all,” she says.
While most will recover, even with quick and appropriate treatment up to one in ten infected with meningitis B will die. Of those who survive, up to 30% of survivors may experience lifelong complications, such as hearing loss, limb amputation or mental disabilities. Alexis, now 11 years old, has been diagnosed with developmental disorders and undergoes regular hearing tests to monitor for any impact as a result of her bout with the disease.
According to Toronto-based family physician Dr. Christine Palmay, “If caught early enough, meningitis B is treated in hospital with antibiotics, but proper diagnosis often does not happen in a timely fashion. Primary prevention like meningitis B vaccination is so important because behaviour modifications are not truly realistic—we cannot live in a bubble and hope that we do not contract meningitis B.”
The problem, Dr. Palmay adds, is twofold: initial symptoms are hard to identify as meningitis B and can progress quickly, and vaccination against meningitis B, unlike some other strains of meningitis, is not part of the routine childhood vaccination schedule in Canada. In fact, she says, while “we have routine immunizations for A, C Y and W-135 it wasn’t until more recently that we were able to develop the science to address subtype B.” In other words, children who have received a meningitis vaccine may still be missing coverage for meningitis B. The good news is that by speaking with healthcare providers to understand the protective health measures available to Canadian families for all strains of meningitis, including immunization for meningitis B, parents can more confidently make decisions about disease prevention options.
“In infants, the higher risk of contracting meningitis B is related to their immature immune system. In adolescents, risk is attributed more to close contact behaviours like living together or sharing personal items—as meningitis B is contagious. The best prevention is immunization,” says Dr. Palmay.” While there is financial cost associated to vaccination for meningitis B, there is also a health cost associated to not being vaccinated. Speaking to meningitis B survivors, they all agree that they would have done anything to go back and get vaccinated earlier.”
Parents looking for resources can turn to www.missingb.ca to find a quiz to test your knowledge about meningitis B, survivor videos, FAQs and a free-of-charge opportunity to chat live with a physician about whether the meningitis B vaccination is right for your child. As we head into back-to-school season Dr. Palmay says, “With children and young adults returning to school this fall, I think that it is essential to embrace a new appreciation for preventative care and to discuss vaccination options.”
Jen Sharpe agrees, her advice to other Canadian parents: “Don’t wait. Meningitis B crept into our life without any warning. We know we were lucky, we got to keep our daughter, when so many families do not. Speak with your doctor to understand the preventative health measures available to your family. You can then be more confident to make informed decisions to keep your child healthy.” —Noa Nichol
Learn more at: www.missingb.ca