Meningitis in your words

Sam Clarke's story

Location: England
Categories: Meningococcal
Age: Young child 3-5
Relationship: Child
Outcome: Bereavement

Sam was a healthy, happy child, but died within a few hours of becoming poorly. He had just turned four. He was a really sweet boy. He liked his cars: he’d sit and play with them for hours, and he liked being outside, but he wasn’t really ‘rough-and-tumble’. He was quiet, but quietly confident, and he always seemed older than he was.

Early on a Thursday evening in January 2006, we were at home when Sam first showed hints of being unwell. He didn’t want his tea, which was unusual because he liked his food, and said he had a tummy ache. He came and sat on my lap and had a cuddle, then he lay down on the sofa, and just seemed a bit tired and washed out – nothing you could put your finger on, really.

I decided to put him to bed at the same time as his brothers: Toby, then nearly three, and Ben, eight months

He was a little bit shivery by then, so I gave him some Calpol. I thought he might have flu, but I wasn’t worried enough to phone a doctor.

He went to sleep, and we kept popping in on him. He was a bit unsettled but he seemed OK.

We went to bed a little later, but were woken by Sam being sick: It wasn’t much, and it was just phlegmy, like he’d had a cough. Then he said his legs hurt, but he’d been running around all day: he’d been out to the park and he’d been swimming the day before, so we thought it might just be that.

I tucked him up in bed with me while Steve went to sleep in Sam’s bed, and we swapped over at midnight. Not long after, Steve noticed a small mark under Sam’s left eye. It was a purplish red, not very big. He’d been holding a juice drink, so we thought he might have been lying on that. Steve lifted his top, and there was a small purplish mark on his chest. He called me and a couple of seconds later lifted it up again and there were four or five more.

It was like someone had taken a paint brush and flicked it. It was that quick: his whole body was just covered.

Steve’s a policeman, he’s really calm, so he said to me really calmly: "I think you should call an ambulance."

But I began to panic. They say you have to do the glass test – you don’t need to do the glass test. You see it, and you know what it is.

After I phoned the ambulance I phoned my parents and said: "Can you get over here now? Sam’s got meningitis, we’ve got to go to hospital."

Trying to stay calm, Steve chatted to Sam to keep him awake.

He said: "Count to five", and he counted to five, and he said: "Can you count to 10?" And he said : "No, that’s too tricky, Daddy."

When the paramedics arrived, they gave Sam a large shot of penicillin and put him into the ambulance: I went with him, while Steve followed in his car. It seemed to take forever to get to Addenbrooke’s.

I was holding his hand and telling him I loved him, and I just kept saying: "Open your eyes, Sam." I kept saying it over and over again, and he did – every time I said: "Open your eyes, look at mummy",- he did. But he seemed to be going downhill so fast.

When we got to the little roundabout on the Addenbrooke’s site, I’ll never forget – he closed his eyes, I told him to open them. And he didn’t.

At the doors of A&E, the crash team was waiting: we followed them in, and stood back while the medics worked on Sam. After 45 minutes, the consultant came over.

I wouldn’t look at him, I thought: "If I don’t look at him he’ll go away",- but he didn’t. So I looked at him, and he said: "There comes a time when we have to stop." And I said: "Well he can’t die, he’s four!" But he did.

We were told that we’d need to go home and medicate our younger boys immediately, which really frightened us, thinking the same thing was going to happen to them. A policeman drove us home. It was still dark.

When Toby woke up the following morning, his first question was: "Where’s Sam?" I said Sam got very poorly last night, and we took him to the hospital, and the doctors tried to make him better, but they couldn’t.

And I told him that he’d died. Our cat had died the week before so he understood that meant he wasn’t coming back.

They take it very matter-of-factly at that age, but what we did notice was that every time he walked past Sam’s bedroom, he’d look in. He’d have a little look, just to see if he was there. And that was one of the hardest things, having Sam’s room empty.

Later that morning, we went back to Addenbrooke’s to see Sam’s body. I felt a bit frightened at first, but I went, in and sat next to him, and read him a story. Going to see him made us realise that it wasn’t him, it was a shell. He’d gone.

The first night without him was awful. We slept in Sam’s bed, just because we wanted to be near him. For the first few nights we weren’t going to bed until two or three in the morning because we were up talking, just trying to work out what had happened.

We tried to get back into a routine for the sake of the younger boys and not long afterwards Ben and Toby moved into Sam’s room – it was what Toby wanted.

But while life gradually returned to normal, there were some situations that I found unbearable. I couldn’t go to Tesco for a year. I just couldn’t face it, so Steve always went. I used to go with Sam, and to go there and not have him. . . There was one time I tried: I drove into Tesco’s car park, and I sat there, and I just burst into tears and had to drive home. I couldn’t do it.

We also live close to the village primary school where Sam would have started that year. It was hard to see Sam’s friends, it still is, and it always will be.

When Toby started school the year after, watching his nativity play was so hard because Sam’s class were all there. I can sit and watch those things now and not cry, but I still look at those kids, and think that should be another one up there.

We now have two more children, Poppy, five, and Joe, three. Yet not a day passes when we don’t think of Sam, not least because both Ben and Joe look so much like him. But in a way that’s nice.

Sometimes one of them will do something, and we’ll say: "Ah, Sam used to do that",- and it will make us smile.

Poppy and Joe never knew Sam, and Ben didn’t really, but they all talk about him. He’s still part of our family. He always will be.

Rachel Clarke
June 2012