Matthew was born perfectly healthy – he achieved his normal milestones, was learning to sit up etc. But the day he turned 6 months old, he seemed a bit off colour, like he had a cold but wouldn’t feed. That evening as I was putting him to bed, I noticed he had a twitch in his right check near his eye. When it hadn’t stopped by the time I’d got him changed, I knew something wasn’t right, and I went straight to the hospital.
A doctor said that the twitching was a seizure, and rushed us straight round to be seen to. Matty was kept in overnight and moved to a ward. In the middle of the night, a nurse came round and saw he still wasn’t asleep or feeding. She felt the top of his head, and moved us straight into isolation where I overheard the word meningitis.
The following day Matty had a full blown tonic clinic seizure which wouldn’t stop no matter what the doctors did. He was taken to intensive care and had MRI scans.
We spent 3 weeks in hospital, where Matty seemed to return to his old self, and we were allowed home.
But a week later, he became unresponsive and not feeding again. I took him straight back to hospital where we spent the next 3 months.
This time I was told the word Encephalitis, probably caused by the herpes simplex virus, most likely by something as simple as being kissed by someone with a cold sore.
After another MRI scan, I was taken into a room where the consultant showed me two scans, he said the white areas were where the brain was permanently damaged. The whole scan looked white.
I had to tell my husband that our son was permanently disabled. Doctors couldn’t say how bad it would get until he grew older.
When we left hospital, we had a nasogastric tube to feed Matty – syringing high calorie formula milk down his tube, a feeding pump for overnight, a variety of positioning equipment as he was unable to move any of his limbs independently – including his head – and a suction machine because he was unable to swallow his own saliva.
Over the next few years, Matty made progress, slowly. When he was one, his dad managed to teach him to suck a bottle again, and then later, purée off a spoon. Later than that, to take a bite of a sandwich. Years of physio paid off, he regained head control and by the time he was 6, he could sit unaided.
However there were more problems. Matty developed epilepsy shortly after leaving hospital. He also had reflux due to the weakness of his diaphragm, which meant he wasn’t gaining any weight: he was constantly projectile vomiting. This also meant further hospital stays with chest infections and pneumonia. He was then medicated because he developed an involuntary movement disorder which left his limbs jerking constantly.
Matty is 13 now, he appears to have grown out of epilepsy and the movement disorder. He is still non-verbal, and is a full time wheelchair user. He can sit unaided and weight bear, but he cannot balance or stand on his own. He attends a special needs secondary school where he seems happy. He is very sociable and enjoys being around people, especially his siblings.
I had no idea what encephalitis was – I’d never heard of it and was too scared to ask. This was before smartphones, so it wasn’t until I nipped home for a shower that I managed to google it –
the first words I found said high fatality rate.
Encephalitis is still so unheard of by so many people, yet it is just as life threatening as, if not more than, meningitis. Because it is difficult to see the total extent of brain damage in young children, parents are advised to ‘wait and see as they grow’ – it’s so difficult to live like this, always hoping but constantly uncertain of what the future holds for your child.
The support from people who have been there, The Eden Dora Trust for children with Encephalitis, is genuinely invaluable. It’s not a faceless charity, you know their knowledge is first-hand, and it means the world to know that there are people there for you.
– By Leila, Matty’s Mum