Meningococcal disease at 1

Meningococcal disease

My son Ben was 13 months old. It was the week before Christmas, 1989.

We were having a normal day when, at around 5pm, Ben became a little grizzly. Assuming he was hungry, I went to make his tea while his grandfather cuddled him.

But before I could feed him, Ben had fallen asleep. He slept for a while, but awoke violently sick, despite his empty tummy. He was irritable and slightly feverish. Was he cutting a tooth I wondered? Had he caught the nasty flu bug afflicting half of the children at my daughter Hollie's school?
Ben was feverish and unable to keep anything down for most of the night. In the morning he finally slept and it was then I noticed a tiny pink rash on his wrist, face and neck. At first I thought it was a heat rash. His fever seemed to have subsided and his hands were, in fact, cool.
I rang my mum-in-law Joan, who worked in a baby clinic. She confirmed the symptoms of the local sickness and flu bug, but she hadn't seen a rash with it before. Call the GP, she suggested.
Alarm bells began to ring. The more I looked at Ben, the more I saw how lethargic and unresponsive he'd become. It was now 7.30am, so I rang the GP's out-of-hours service. I'd never called a doctor out before. They advised me to take him to the surgery when it opened. But, thankfully, I asked to speak to a doctor. I was worried.

I'd heard of meningitis before, but had no idea of the symptoms. It was the symptoms that became the key to the next few anxious hours and days.

A locum, Dr Elizabeth Bute, rang straight back. Once I'd described the symptoms, she insisted I take Ben straight to casualty. She was 20 minutes away and, while she didn't want to frighten me, she was concerned this was serious. Time might be critical. I was absolutely stunned.

Two minutes later she called back. Casualty would be waiting, I was not to change Ben's clothes, just GO.

It was 8am and rush hour. During the fretful 30-minute journey, Ben visibly declined. He was even more lethargic and the rash was really evident now. I was panicking. My instinct was to keep him awake, but I was driving. I just kept calling, shouting his name and singing to him.

The hospital was on alert. Within minutes they'd cut off Ben's baby grow and put him on a drip. The rash had started to spread and now resembled small pea-sized burns, which were turning reddish-purple. The doctor was pretty certain our little Ben had meningococcal septicaemia.

Ben was given large doses of cefuroxime and other drugs. Nurses and doctors kept repeating how lucky we were to have caught it so quickly. The implication was clear - if we'd arrived an hour or so later, Ben might not have made it.

Ben then got a bed at Great Ormond Street Hospital, one of only nine pediatric intensive care beds in London that year. Ambulance drivers were on strike that Christmas, yet they came out specially to take him to Great Ormond Street.

After five days in intensive care, he finally turned the corner.

We were so incredibly lucky. Dr Bute undoubtedly saved his life. Ben got fantastic treatment and care in hospital. Ambulance drivers broke their strike to help us. Professor Mike Levin, a leading expert in the field, headed the team at Great Ormond Street, a centre of excellence in the treatment of meningitis and septicaemia.

Ben made a full recovery after two weeks in hospital. He is now a cheeky, bright, 20-year-old strapping lad, enjoying university. In fact he ran the Bath half marathon last year and has just taken part in a rag week event (hitchhiking to Paris) fundraising for the Foundation.

I became involved with the Foundation 19 years ago. I wanted to raise awareness of the symptoms of meningitis and help fund vaccine development. I later become a trustee.

When Ben was in hospital Mike Levin said something I'll never forget. If a child is ill with unspecific symptoms, you should always check them regularly throughout the night, looking for changes or deterioration, even if they've already been seen by a doctor.

It made me think. What if Ben had become ill five hours earlier, becoming sleepy at two in the morning rather than at 7am? Maybe I would have let him sleep. Maybe I wouldn't have noticed the rash. Maybe I'd have thought twice about calling a doctor out.

I can't imagine what might have been. I only know how lucky we were.


APRIL 2009