Today, on World Meningitis Day, one father shares his story of what life is like when a child contracts the dangerous and often fatal illness.
Boxing Day 1989 is a day that is forever etched into Bruce Langoulant’s mind.
Earlier that year, his wife Jenni had given birth to their second daughter. A healthy, beautiful baby girl called Ashley. For the first six months they were a normal family. But on December 26 that peaceful life was very suddenly taken away from them.
Bruce and his family were at a friend’s BBQ and – as most gorgeous new babies are – little Ash was the star of the day.
“She was sitting on her Grandfather’s lap and he said, ‘Isn’t she the picture of health?'” Bruce tells me.
But as the day went on though, Ash’s typically happy demeanor soured. She developed a high temperature, was restless and sooky. So Bruce and Jenni decided to leave the BBQ and take Ash to a GP. The Doctor prescribed four hourly panadol to lower her temperature and then sent the family home.
At this point, Bruce and Jenni had no idea, but they were already losing valuable time.
Because Ash had contracted meningitis, a disease that strikes quickly and cruelly.
Bacterial Meningitis is the most severe and common form of meningitis. It starts out looking very much like the common flu and is contracted through respiratory droplets, spread either by coughing, sneezing, kissing or sharing food. Infants are most at risk as their immune systems have not fully developed.
Once the virus hits, every minute matters, as it evolves incredibly fast.
In 50 percent of cases, it is fatal.
But it’s also largely preventable — if your child is adequately vaccinated.
In 1989 though, there was no vaccine, nor any awareness for what meningitis even was. So still unaware his daughter had succumb to a virus that would change her life, Bruce followed the doctors orders and took Ash home.
“I remember bathing her. She was an absolutely limp, bumble. Just staring and quiet, and I’m thinking ‘Oh, you really are sick aren’t you?'” Bruce recalls, as he describes to me the horror that unfolded over the next 12 hours.
“We put her to bed and she was quiet most of the night.”
The next morning the doctor called to check in. When he heard Ash was barely making any noise, alarm bells rang. He asked Jenni to bring her to the surgery as soon as possible.
Bruce was in the middle of securing a deal for a new business the family were buying — but when the doctor called him out of his meeting, his world changed. Bruce was given Ash’s diagnosis.
“I thought, ‘meningitis? What’s meningitis? Is that something to do with her head?’ But I could tell by the tone in his voice that things weren’t good.”
By the time Bruce made it to the hospital, Ash was well into the grips of the disease.
“This quiet little bumble which I left in the morning at 7:30, by 11am was this screaming, whaling, distressed package and it blew me away. I couldn’t believe it, he said.
“I lost the strength in my legs and started to cry.”
Symptoms of meningitis are varied and can appear differently in many cases. It can manifest in high fevers, a stiff neck, sensitivity to light, drowsiness, a blank staring look, irritability or altered consciousness. It may also not appear in this manner at all. (You can read more about symptoms here.)
Bruce says because the disease is so hard to spot parents just need to trust their instincts.
“Parents know their child best and if they think they’re unusually unwell, then go to the doctor, he says. “And if you can’t get in, go to emergency. You’ve got to take control. There were no messages in the community empowering me.”
Once Bruce and Jenni were able to take Ash home, she regularly had 45-minute screaming sessions that would end only once she exhausted herself into sleep.
“I remember Jenni saying, ‘I enjoyed being a normal family, but I don’t think we’ll be normal from this point forward’,” Bruce recounts.
Ash is now 25 and unable to talk, walk or feed herself. She is profoundly deaf and as a result of the disease has developed Cerebal Palsy and Epilepsy.
She is totally dependent on her parents, and is likely to live well into her ’60s or ’70s.
Bruce says life since the disease has been like running a business. Ash needs around seven carers who come in at different times of the day.
“We need someone to come in the morning to get her out of bed, change her, dress her, someone to take her out until three and do activities, have a form of quality of life. Someone else to change her, shower her, put her to bed. Then we have her overnight.”
That helps costs $200,000 a year. Some of it provided by the government. But in general, it’s an incredibly underfunded industry.
Over the last 20 years Bruce has campaigned to raise awareness of meningitis as Chairman and Founder of The Meningitis Centre in Perth, Australia.
He has successfully lobbied the government to allow the Hib, Meningococcal C and Pneumococcal vaccines on the National Immunisation Plan. He is now pushing for the final Men B vaccine to be added to that list, so that it is free for everyone.
Because of people like Bruce, Australia is the global leader in meningitis prevention. Those affected have dropped significantly since the early ’90s and this final Men B vaccine will save hundreds more lives and prevent other families facing the same fate.
“I’m 62 and we’ve had this for 25 years and we’ve got to make decisions everyday about next week, about the support team, changing schedules, where Ash is going to live in a few years time or if anything happens to us,” he says.
“The independence is gone. There is a dependence. Dependence on us as parents and dependence on others to look after her.”
Although the the final vaccine could be a major breakthrough in eradicating meningitis in Australia, it has yet to be approved. You can help Bruce and The Meningitis Centre lobby the government by signing a petition here.
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