Touching Lives - March 2012
Meningitis - every parent's worst nightmare
The Waring family will never forget Monday 31 January 2005. It was the day baby Cieran contracted meningitis, which changed the family’s lives forever, recalls mum Susan.
Susan’s five-year-old daughter, Caitlin, was getting ready for school while twin boys Cieran and Connor, who were just nine-months old, were lying in their cots. It seemed a very ordinary day but then Cieran, the elder twin by a minute, started to become seriously unwell.
“I went into the twins’ bedroom and Cieran seemed to be burning up but shivering, which was strange because the room wasn’t cold,” recalls Susan. “I took him straight to the doctors and was told it was a viral infection, that there were a lot of them around at this time of year, and was sent on my way.”
But Cieran’s temperature continued to rage, he began to vomit ferociously and became very drowsy. He could not keep his eyes open for very long and cried in pain when his nappy was changed. Desperately worried, Susan and husband Gary took him to hospital. “I was already worried it could be meningitis,” says Susan. “It’s every parent’s worst nightmare and when I was 18 I’d had a friend who contracted the disease and his main symptoms had been shivering and a high temperature. Meningitis is often portrayed as a rash and you’re told to do the glass test. Cieran never had any kind of rash and if we’d waited for one to develop we would be telling a very different story today.”
In hospital he was given a lumbar puncture to diagnose the disease and doctors begun vital antibiotic treatment before waiting for the positive result. Just when it seemed he had beaten the deadly infection, baby Cieran’s condition deteriorated rapidly. Sue had been persuaded by nurses to spend her first night at home. “I was exhausted. I’d been sleeping on the hospital floor for days and had another baby at home who was wondering where his mummy had gone. Then I got the phone call everyone dreads.”
Cieran had suffered a prolonged seizure and was fighting for his life. When his parents arrived back at his bedside he began to fit again and as doctors battled to control it, Cieran stopped breathing.
Dad Gary says: “He was looking at me and I could tell he was in a lot of pain but I couldn’t do anything. I was just shouting his name. I had hold of his hand and he actually died. It was the hardest thing I’ve ever done.”
Cieran was resuscitated and transferred to intensive care. Fearing the worst, Sue and Gary had both twins baptised at the bedside.
Thankfully, Cieran did recover but today, aged seven, he bears the scars from the battle that so nearly took his life. He is profoundly deaf, with very little speech, and also has epilepsy and cerebral palsy affecting his lower body. “He came home a 22lb newborn,” says Susan. “He lost all his skills and was unable to even hold his own head up anymore. With intensive physiotherapy we managed to get him walking but he does have a wheelchair for distance use. It’s been hard but he’s a real character and we wouldn’t be without him, but you still grieve for the baby he was before. Because he is a twin there is a constant reminder.”
Due to the speed at which it can strike and because initial symptoms can easily be confused for other illnesses, children with meningitis are often desperately ill by the time they get to hospital.
Antibiotic treatment can save lives but for some it will already be too late. Vaccination is therefore the best way to prevent the disease.
“Some people questioned whether he’d had all his injections as a baby,” says Susan. “They don’t realise there is more than one type of meningitis and there is still no vaccine to prevent the one he had, meningococcal meningitis type B.”
Children in the UK are routinely vaccinated against three main causes of bacterial meningitis. This includes the Haemophilus influenzae type b or Hib vaccine, the development of which was supported by Action Medical Research. Previously Hib infection had been the most
common cause of the disease in children. Today cases of this type of meningitis have been virtually eliminated.
Now meningitis B (MenB) is a leading cause of the illness, with around 1,000 to 1,500 cases in the UK each year. Between one child in ten and one in 20 of those who become ill will die and survivors are often left with devastating disabilities.
Action Medical Research is continuing to help fight meningitis by supporting the development of a new vaccine for MenB. Led by Professor Andrew Pollard, a team at the University of Oxford hopes the new vaccine will offer broadranging protection against the many subtly different types of MenB bacteria. If their work is successful, they plan to set up clinical trials as soon as possible.
Watch our short film about Cieran’s story at: action.org.uk/take60