what it feels like: losing your child to meningitis
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macey, cassey and mary clough, left to right, pose for a photo at macey's grade 8 graduation.
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mary clough says if she had known there was a vaccine for meningitis, her daughter would still be alive today.
it’s something that haunts her days and brings her to tears when she talks about her wonderful macey, who was a sensitive young woman always thinking about others. “she would always go out of her way to help her friends and the new kid in class. she was going to school to become a teacher for the earlier grades because she loved children,” mary says. “mace was a wonderful big sister to cassey from the time cassey was born and she was my little helper as her little sister grew up.”
macey was just 19 when she died on february 26, 2005. almost 20 years later, her mom, a former bookkeeper who lives in muskoka, ont., is still trying to heal from the loss. it was sudden and entirely unexpected – and as mary later discovered, likely preventable. “i don’t want any parent to go through this. there is life after you lose a child, but it’s never the same. you have to learn to live with it. i remember the first time i was laughing again and i felt guilty. it took a long time. you learn a different way of living.”
what is invasive meningococcal disease?
invasive meningococcal disease is a rare but life-threatening bacterial infection that can infect the lining of the brain and spinal cord, causing meningitis, and the bloodstream, causing septicemia. there are anywhere from 100 to 400 cases of meningitis reported every year, according to meningitis foundation canada, with the disease leading to death in 10 per cent of all affected individuals. teens and infants are most likely to become infected but it can strike anyone at any age. it tends to be more prevalent in crowded spaces or dormitory living where there can be shared drinks or shared cigarettes, for example. another sobering thought is the significant long-term consequences, like limb amputations, brain damage, deafness or learning disabilities.
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“there are many different strains of it, some of which cause disease,” dr. ronald gold, medical advisor with meningitis foundation canada, told global news. “and you find them in maybe 20 per cent or 30 per cent of normal, healthy teenagers and young adults. they can carry the bacteria in their throat and they don’t get sick, but they can spread it to other people.”
there’s been a rise in cases in several provinces this year, with health officials warning about the serious risks and importance of vaccination.
even when the disease is treated, as many as 10 per cent of patients die, usually within 24 to 48 hours after symptoms start. another complication, symptoms appear to be the flu, with fever, headache and vomiting. often there’s also a distinctive rash with pink patches on the skin.
unexpected and unimaginable
for mary, part of heading off to college for macey was making sure her daughter was up to date on all her vaccines necessary for school. “this was in september of 2004 when the meningitis vaccine was not on the canadian or ontario vaccine schedule for kids in school yet. our family physician said she was good to go and had everything she needed.”
the next year, macey had a spring break trip to new orleans planned with college friends, but she called home on february 25 and told her mom she was feeling well and wasn’t going to go on the trip. she wanted to come home but didn’t feel well enough to drive and was pretty sure she’d caught a bad flu that was going around. so, mary went to pick her up at college in peterborough and then drove back to bracebridge where her husband harv was working. macey said she was okay to drive the rest of the way home, so mary decided to get some errands done. the couple’s younger daughter cassey, who was 13, was home at the time when macey got in and quickly headed up to her bedroom to lie down.
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“i got home i guess around five o’clock and i went upstairs to check on mace and she had thrown up on the floor,” mary recalls of the grim sequence of events. “i tried to wake her up and i was talking to her, but she looked at me like she didn’t know who i was and didn’t know what was going on.” she called 9-1-1 and paramedics took her daughter to the hospital in bracebridge, and she and her husband followed.
mary recently returned to fine art painting and says her favourite piece is a watercolour of her daughters macey and cassey.
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“we had thought it was the flu, but i knew it was more than that. there was something else going on. she didn’t do drugs, she didn’t do any of that stuff, so i knew there was something really wrong. we got to the hospital and it took them quite a long time to diagnose mace. she had invasive meningococcal disease that went straight to her blood, so it was shutting down whole body.”
the medical team wanted to fly macey to st. michael’s hospital in toronto to try to stabilize her failing body, but had to send her by ambulance due to bad weather. “the weather wasn’t great because it was winter. we got there at four in the morning,” mary says of her drive by car, her voice breaking. “she’d already died. they had tried to resuscitate her a couple of times, but she didn’t make it. less than 24 hours from a healthy child to one that was dead.”
macey had signed her organ donor card but the disease had ravaged her body and organs so badly she was unable help someone else.
grieving the loss of a child and raising awareness for meningitis
it’s hard to imagine how mary felt leaving the hospital that dark morning with no real understanding of what had happened to her daughter and shouldering the emptiness of loss and bewilderment. she talks about shutting herself down while at the same time trying to be present for her younger daughter cassey, now a geologist based in toronto.
mary eventually had some counselling and also found support through meningitis foundation canada, one of the only sources available to help the family understand what the disease was about and find a sense of support from shared experience. the non-profit founder, kathryn blain, lost her son to meningococcal septicemia in 1995 when he was 19.
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“everyone grieves differently,” she explains, adding that there’s no way to fix it. finding a new sense of normalcy meant leaving her job and later finding work at local gift stores. along the way, mary also volunteered at a hospice, something that has been helpful and meaningful to her as a way of coping with her loss. she still helps the hospice with fundraising and other initiatives in her retirement.
but it’s taking action to help others that keeps her going. she delivers meningitis information pamphlets to area clinics and wants to contribute to raising awareness for meningitis and the vaccines that are now available, including the vaccine for group b bacteria which is controversial because it isn’t part of all public health funded vaccine programs.
“the b vaccine is not part of the schedule in canada, so most people don’t know about it. and there are even doctors who aren’t aware. it’s a huge problem. i want to do whatever i can do to help somebody so that nobody has to lose their child to meningitis.” the answer to saving lives and families isn’t about blame or pointing fingers, but helping to make change, she explains.
and recently she returned to her fine art painting as a creative outlet for enjoying landscapes and the beauty of nature. her most favourite piece, though, is a watercolour of her two daughters on the shore. it sits on her mantel between their framed portraits.
“she’s been gone almost 20 years, and it feels like yesterday in a sense,” mary says of her love for her daughter. “it is so important for us to keep our mace’s memory alive. it was a short life, but she made an impact on so many in those short 19 years. people often don’t want to mention her name because it makes us cry, but that’s okay, they are tears of love.”
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