Doctor urges parents to be informed about rare yet potentially fatal disease

Back in 2011, Jennifer and Brian Sharpe of Kitchener, ON, took their 5-½ month old daughter, Alexis, to the hospital with a high fever. At first, doctors were unable to determine anything serious and sent the family home. Over the next three days, with her condition worsening, after several calls to Telehealth and another two hospital trips, she was diagnosed with meningitis B, an invasive bacterial meningococcal disease that is uncommon, but can be life threatening. Early symptoms mimic a cold or flu, but can progress quickly and may include headache, fever, irritability, drowsiness, cold chills and vomiting. In an infant, symptoms can be hard to notice and the disease hard to diagnose.

“We were told this disease is potentially fatal, but because they caught it early and treated it quickly with antibiotics, they were hopeful that she would survive. What doctors did warn us about were a variety of scary lifelong outcomes,” says Jennifer.

After a month in the hospital, Alexis was released. “In the two years that followed, she experienced a lot of illness, and some required hospitalization due to infections that got out of control,” explains Jennifer. Now 12 years old, Alexis has some neurological developmental disabilities. “We don’t know if there’s any relation between those issues and the meningitis she had as a baby.”

Like with many infections, the bacteria that causes meningitis B is passed along via transfer of saliva and mucous. A carrier may have no symptoms. Most often, the disease affects infants and children under five, and adolescents. Recent outbreaks in Canada have also affected young adults aged 18 to 24, an age group often engaged in high-risk activities that may include communal living in school dorms or residences, sharing food and eating utensils and close physical contact. According to the World Health Organization, up to 1 in 10 cases can be fatal, and up to 1 in 5 experience lifelong complications, such as hearing loss, mental disabilities or limb amputation.

“Meningitis B is now the most common type of meningitis in Canada,” explains Dr. Vivien Brown, Assistant Professor, Faculty of Medicine, at the University of Toronto and Immunize Canada Board Member. “While it is rare, about 200 cases per year in Canada, this is a deadly disease with a high mortality rate and high morbidity.”

Unfortunately, when Alexis was a baby, there were no vaccines available to prevent meningitis B. Today, while there are vaccines for other serogroups of meningitis on the vaccine schedule, meningitis B vaccines are only available to those who ask for it – and pay for it.

Kate Healy, 27, of Toronto, contracted meningitis B when she was 16 years old, following a summer working as a camp counsellor. Shortly after leaving camp, she began feeling unwell and developed a fever and then a rash on her legs that was spreading. She was taken to the nearest hospital, but no one could figure out why her condition was worsening so rapidly and was transferred to a larger hospital two hours away. During the ambulance ride, she developed the wider known symptoms of a sore neck and headache.  Upon arrival at the second hospital, a spinal tap confirmed a meningitis B diagnosis as well as a secondary infection called septicemia. After being airlifted to another even larger hospital, “It got very dire from there,” says Kate. “I was put into an induced coma and doctors told my parents I only had a 5 percent chance of making it through the night.”

Miraculously, Kate eventually recovered, but was left with significant scarring on her legs and a partial amputation of a toe. “I missed months of school and had to deal with surgeries, wound care, physiotherapy, specialist appointments. I had to relearn to walk and gain strength in my body. But what has had the most significant lasting effect was the scariness of the experience overall as well as the mental and emotional stress on both me and my family.”

Vaccines for meningitis B have only been available since 2014, but even now, they’re not on the vaccine schedule for most provinces, according to Dr. Brown. “Provinces make decisions based on cost effectiveness and because this is a rare disease there may not be the financial incentive to immunize a large population base.”

Vaccination is the best way to prevent meningitis B. “I want to protect my patients the way I protect my family and I never want to lose a patient to a vaccine-preventable disease,” Dr. Brown asserts. Talk to your doctor to learn more about meningitis B and preventative options and visit www.missingb.ca.