Benjamin was a healthy, lively, and happy baby. One evening, arriving home from work, Marie-Ève Gagnon of Terrebonne, Québec found her four-month-old boy sluggish and feverish. Worried, she immediately took him to the paediatrician, who suspected gastroenteritis and suggested that Marie-Ève give her son fever medication. At midnight, the fever still unbroken, she took Benjamin’s bassinet to her own room to keep a close eye on him. In the middle of the night, she woke up to her son’s ragged breathing. Turning on the light, she was horrified to find that her son’s body was covered in blue bruises. “I called 911 right away, and that’s when my nightmare began,” she says.
A rare but devastating illness
What Marie-Ève didn’t know during her six-hour wait at the hospital was that her baby had developed meningococcal disease. Rare but potentially devastating, the disease can cause meningitis, an infection of the membranes surrounding the brain and spinal cord, as well as a blood infection known as sepsis. “Someone can go from feeling fine one moment to experiencing severe repercussions, and even death, within 24 hours,” says Dr. Anne Pham-Huy, chair of Immunize Canada and a physician specializing in infectious diseases at CHEO, a paediatric hospital and research centre in Ottawa, Ontario. “It really is a medical emergency. Acute care is needed right away, as well as the administration of antibiotics as soon as possible. We don’t wait. Minutes count.”
In Canada, five major serogroups of bacteria cause most meningococcal cases: A, B, C, Y, and W135. Benjamin had developed meningococcal meningitis type B. “The diagnosis felt like a nuclear bomb had just exploded in my heart,” says Marie-Ève. “My ultimate goal was to keep my son alive, no matter what condition he was in. I was 19, but I was fully aware of the consequences.”
Despite realistic expectations regarding her son’s future, Marie-Ève never imagined the sheer amount of ongoing complications to come. Over the past 21 years, Benjamin has undergone 57 surgeries, including amputation of both of his legs, his right hand, and a few fingers on his left hand. He has experienced episodes of epilepsy, has kidney and eyesight issues, and suffers from a major intellectual disability.
Marie-Ève has expended an enormous amount of effort and resources to provide Benjamin with the best treatments and to adapt the family home to the limitations caused by his disability. “It’s one battle after another, and it’s going to be this way for the rest of my life,” she says. Fortunately for his family, the illness has never robbed Benjamin of the smile and joie de vivre he has always had.
A preventable disease
Meningococcal disease spreads through close contact, such as when members of a household kiss, cough, or sneeze close to each other. It can also be transmitted by sharing things such as straws, water bottles, or toys that come into contact with the mouth. Although anyone can be affected, children under the age of five and people with underlying medical conditions are at greater risk of developing severe complications. Those aged 15 to 24 are more at risk of infection because of activities or behaviours that lead to close contact with infected individuals.
In Canada, all provinces and territories offer a meningococcal C immunization program at one year of age, as well as a second vaccine during adolescence (either serogroup C or serogroups A, C, Y, and W135). Although two serogroup B vaccines have been approved in recent years, they aren’t part of the routine meningococcal immunization programs that are publicly-funded.
The importance of vaccination
“I think it’s important for parents to know that there are two vaccines for meningococcal B, which is the most common cause of meningococcal disease,” says Pham-Huy. She advises parents to speak with their doctor or health care provider about the meningococcal B vaccine, and also to ensure that their child is up to date with all routine meningococcal vaccines in their area.
For parents, being proactive is key. Vaccination is a safe and effective way to protect your children from meningococcal disease. “I’ve seen cases of meningococcal disease with terrible consequences, and the family had no idea that it could’ve been prevented,” says Pham-Huy.
Marie-Ève strongly encourages parents to have their children vaccinated. “As parents, we have no right to make the decision to put our children at risk,” she says. In her view, being proactive and having a clear conscience is better than having regrets later if your child contracts the disease. Unfortunately, meningococcal B vaccines weren’t available when Benjamin developed meningitis. “Had this opportunity come up when I was 19, I wouldn’t have hesitated for a second,” she says.
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