For seven years the family battled on, making the best of things, but now, with support from our financial support grants their family life has been transformed. Mother Emma tells their story.
Matthew was christened on Sunday 18 April but the following Tuesday wasn’t himself. I thought he was just teething; he didn’t have a particularly high temperature. I had him in a carrier and he was burying his head, which was unusual – he was usually more alert – but it didn’t seem serious.
I put him down for his lunchtime nap and, again unusually, he didn’t want to wake up. I remember thinking this is not good; you never sleep, but I still put it down to teething. I decided to make him some porridge – he normally ate like there was no tomorrow – but this time he struggled and spilt some on his sleep suit.
As I stripped it off to change him I noticed there were a few spots above his left knee. I knew about the glass test and when they didn’t disappear when I used it I rang my husband and screamed ‘Matthew’s got meningitis’.
He told me to ring the doctor and we went straight there.
It all happened so quickly. Within 15 minutes he had gone as white as a ghost, floppy and developed a temperature. We rushed him in an ambulance to Barnstable Hospital – I had to hold him in the ambulance and he was unconscious by this time.
By the time we got there the spots on his tummy and his back were merging into a purple bruise – it looked hideous. He was put on a heart monitor and drips and we were told the next 48 hours would be critical. It was horrible to see this really active, fun-loving child who loved his life and his food hooked into all these monitors, with a drip in his foot, and him not even reacting to any of it.
I couldn’t hold him, couldn’t comfort him and didn’t know if he was going to live or die. Our whole world was turned upside down – no one prepares you for this, no one can. My imagination was running away with me. I sat with him but couldn’t sleep. What if he dies I thought, I’ll have to go with him to look after him – it was such a horrible time.
Back to hospital
But after two weeks of intensive treatment doctors felt confident that Matthew was going to pull through. After four weeks we were allowed home, with nurses visiting to look after his drip. We thought the worst was over but at eight months he stopped breathing and started to fit. As if Matthew hadn’t already suffered enough. It was back to hospital.
When we first left hospital nobody had given us any information about what to expect or the impact Matthew’s illness would have on his and the whole family’s lives.
His biggest battle has been with his development. Matthew has developed a sensory processing disorder, which means he finds light touching distressing but heavier contact comforting.
His speech and development were not what I expected them to be, but I had difficulty persuading his school there were any issues here. Now thankfully he’s been tested and we know he has a sensory processing disorder. He’s on the go at 100mph all the time, reckless of the consequences of his behaviour and with no perception of the damage he could do to himself.
Different body clock
He struggles with the fine motor skills too and can be quite clumsy. Although he can understand well enough he struggles with communication because of his limited speech and reading skills. And his body clock doesn’t tick like the rest of ours do. He doesn’t go to bed or sleep, meaning the rest of us were sleep deprived too.
We had seven years of this behaviour without understanding it or knowing what was happening. I thought it was my fault – because nobody told us what to expect. People just aren’t aware of this side of meningitis – it’s terrible if you’re unlucky enough to lose a limb but then there seems to be support available for you – at this stage we weren’t given anything.
Eventually we saw an occupational therapist for Matthew’s sensory problems and she put us in touch with Meningitis Now through the website. I telephoned the helpline and they arranged for a home visit from one of their support officers.
Talking to someone who understood was just such a big, big relief.
Transforming the family
Following this we’ve successfully applied to the charity’s financial support grants scheme for a bed, sensory toys and an iPod for Matthew. You wouldn’t believe how this has transformed our family life. Matthew would not go to bed or stay in bed before, but now he has a bedtime routine and will stay there for long periods of the night.
The sensory toys – in effect a big Lego set – make an enormous difference because he has to organise himself to use these. He’s coming on so much.
His behaviour has affected us all – people don’t understand how something like this turns your world upside down. We all love him to bits but it has been hard at times. His big sister, Libby – she’s two years older than Matthew – is great though, she never complains or gets jealous of the attention he receives and she dotes on her younger brother. There’s a fantastic bond between them.
Matthew battles every single day with the legacy of this disease but he is improving, so much so, thanks to the fantastic information and support we were given by Meningitis Now.
I had viral meningitis myself when I was younger and still suffer blinding headaches. I think hospitals should do more and have better systems in place to let people know about the after-effects of these diseases and the impact they can and do have.