my advocacy for meningitis: 'grief does not have a finish line'
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with grief counselling, kathryn blain, right, connected with other parents who had lost children to imd and she eventually got to a place where she could really begin her advocacy.
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few diseases evoke the fear among parents that meningitis does. it is not about the statistics. it is about how a very healthy child can be stricken and fighting for their life within hours, and if they survive, they may still face amputations, brain damage, organ failure and blindness.
“i know firsthand how devastating imd – invasive meningococcal disease — is to the individual and their families. it is like a thief in the night,” says kathryn blain, a woman who has dedicated her time and energy to supporting families who have experienced the rare bacterial infection that enters the body through the nose and throat, travels through the spine and inflames the tissue of the brain. she formed the non-profit meningitis foundation canada in 1998, based in waterloo, ont. where she lives, at a point when there was little known about the disease and very few scientists in canada were researching its treatment. there’s still so much awareness and education that needs to happen to save lives, she says. the foundation is the only patient advocacy group in the country.
unfortunately, kathryn came to be an expert advocate and valuable resource for families, healthcare providers and policymakers through the most tragic circumstances. her son, michael longo, was just 19, on the cusp of the next chapter in his life, when he died suddenly from the disease. he never woke up from a coma in the icu. “losing a child is a parent’s worst nightmare, it is something that you cannot imagine before or after it happens,” she says. “for the next two years, my life was just, well, i did not do very much at all.”
michael died on may 9, 1995, almost 30 years ago, and kathryn recalls the surrealness of the events that left her and her family with the pain and heartbreak of loss. “grief does not have a finish line,” she explains. “healing has many layers and all the emotions that i felt after his passing can be brought back in an instant to this day.”
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the core of her advocacy is sharing michael’s story.
he was a popular and gifted student, editor of his high school newspaper and yearbook photographer, and a selected youth participant for round table discussions on future planning for the city of waterloo. he planned on studying technology at york university the next fall.
“as a parent, i thought michael was very intelligent and he used that to help other people. there was a mom who came to michael’s visitation and said to me, ‘you don’t know me and you don’t know my daughter, but i came here to tell you a story.’ when her daughter was in grade 9, she was sitting in mcdonald’s all by herself. michael was with his friends when he saw her, and he came over and sat with her, and he said, ‘i remember what it was like to be in grade 9 … if you ever need a friend, come looking for me.’” his high school, st. david catholic secondary school, named a wing of the building in his honour.
the sudden impact of meningitis
it all started so innocuously. michael was not feeling well on a friday evening, but not that unwell that he didn’t go to a party with his friends. saturday morning, though, he was quite sick and by early afternoon when he got up, he collapsed and passed out. the ambulance got him to the hospital and fortunately there was a nurse in the emergency department who saw michael and recognized the red and purple petechial rash on his skin which is a marker of severe disease, says kathryn, although it doesn’t appear in all cases of imd. but it means the bacteria is in the blood causing septicemia. (your body produces an overwhelming clotting response which stops oxygen from reaching your extremities.)
the er doctor confirmed suspected imd and rushed michael to the icu, telling kathryn it was “a race against time,” she recalls. that phrase headlines her foundation website. “you can’t believe this because you go from your child not feeling well and passing out to all of a sudden, they can die.”
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the family requested that michael be airlifted to toronto general hospital, and that saturday evening in toronto he had trouble breathing and was put on a respirator. then he slipped into a coma. “he never spoke after that,” kathryn says, adding she remained hopeful. by sunday morning, his kidneys were failing. “i felt very positive that we were going to get through this. i knew nothing about meningitis. they were doing everything they could, he was in icu, so he had a nurse with him all the time, but there was no change.” monday night, kathryn and her husband left the hospital and walked to a nearby hotel, desperately needing some sleep, but within an hour they had a phone call that michael went into cardiac arrest. the couple ran back to the hospital where the medical team worked to revive their son but couldn’t save him.
what followed in the immediate aftermath of her son’s death ultimately led her to a path of advocacy and making change to help protect others. she says she knows that’s what michael would have wanted.
“i can remember as we left the hospital thinking they didn’t give me anything. they didn’t give me anything to understand or to reach out to an organization. that stood out for me. then we came home and we requested that people provide funds for research rather than flowers. and the funeral home came back and said, ‘there’s nowhere to send this money. there’s nothing in canada.’ i couldn’t believe that,” she adds. “so we put donations into a trust account.”
michael longo passed away at the age of 19 from invasive meningococcal disease.
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from tragedy to advocacy
while the reality is that everybody’s life picks up and goes on, kathryn says her life came to a grinding halt and she withdrew. her daughter, a year younger than michael, was also devastated. with grief counselling, kathryn connected with other parents who had lost children to imd and she eventually got to a place where she could really begin her advocacy. waterloo region also saw a meningitis outbreak the same year she established her foundation. two teens died and four others survived cases of meningococcal meningitis group c, prompting widespread fear and a mass vaccination program for elementary, secondary and university students, cbc news reported.
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the meningococcal conjugate vaccine, for groups a, c, w and y, for children and adults was introduced in canada in 2005, with each province and territory managing its own publicly-funded vaccination program. kathryn talks about kids in ontario receiving the conjugate vaccine at age 12, with guardian consent, but says that what isn’t widely understood is that by the time they enter university or college, that vaccine is no longer as effective and they need a booster.
“it’s also a little murky in that there’s not one vaccine given. there’s a different vaccine for the strain c that’s given to babies,” she says, noting that the lethal meningitis b strain is most prevalent in canada because the vaccine for it has never been part of the public vaccination schedule, and it’s only recommended in the event of an outbreak. many people may not even be aware of meningitis b or know that it is the most prevalent.
now, meningitis b is the most recent vaccine available, but it currently is not provided by public health in canada with a couple of exceptions in nova scotia for first year university and college students and prince edward island for all post-secondary students.
kathryn and her board members have launched a letter writing campaign to post-secondary institutions to be a part of policy change that would promote students entering their first year to have the meningitis b vaccine and a booster for the conjugated a, c, w, y.
prevent future tragedies with awareness
“we all have a social responsibility to protect our young people in canada,” she emphasizes. her role is to lead discussions with organizations on awareness campaigns about meningitis b, for example, and world meningitis day on october 5. she also responds to questions and provides support to individuals and families. the foundation website has resources including a toolkit for parents, prevention tips and information on the signs and symptoms. you’ll also find impactful videos of experiencing imd, and an email form for people to reach out to dr. ronald gold, meningitis expert and former head of infectious disease at sickkids hospital in toronto, for advice and information.
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“i knew that michael was going to do something that would impact others,” kathryn says. “that’s why, for me, i have to use what i know to help others, because i know michael would’ve wanted me to do that. to let people know what imd is all about, to let people know that here we are in 2024, and all that is available, the information, the vaccines, it’s preventable. people need to know that. it’s one of those diseases that a lot of people keep at arm’s length, because it’s frightening.”
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