Meningitis: 'We saw our son suffering in agony'

"As a mother-of-three I've always been aware of meningitis and without I'd fail check my boys for a rash if they felt unwell," says Angela. "I thought if there wasn't a rash I could rule meningitis out."

The family's nightmare started one morning when Samuel woke up with a temperature and a runny nose. As it was winter, Angela thought nothing of it and went to work while her husband cared for their son at their Bradford home. When she returned that afternoon Samuel was asleep, having got worse during the day.

"We didn't know that not all symptoms of meningitis appear at the same time and that Samuel was displaying key markers, like drowsiness, long before the rash appeared," says Angela. An hour later she undressed Samuel and, to her horror, found an unusual rash.

"We immediately did the tumbler test' (pressing a glass against the flesh) and the rash didn't fade under pressure," she says. "By now I knew something was very wrong."

Angela called a doctor and while waiting for him to arrive she kept taking Samuel to the window to see if he reacted to bright light, which she knew was another symptom of meningitis. By this stage Samuel was showing signs of distress, didn't want to be touched and was having spasms. But the doctor diagnosed flu and prescribed antibiotics.

"Although Samuel picked up a little there was still that nagging doubt in my mind. Call it mother's intuition but he seemed unusually poorly," says Angela. "I wasn't convinced we were dealing with flu."

That evening Samuel woke in tears. The rash had spread and there was a huge blue swelling on the side of his foot. "We didn't know what it was so we gave him another dose of antibiotics and put him back to bed while I rang the GP's out-of-hours service again," says Angela. "We knew it was serious when the doctor ran into the house. With just one glance at the rash he diagnosed meningitis and said he needed to give Samuel an injection straight away. I was devastated."

Samuel was critical. While waiting for an ambulance Angela stripped him to his nappy and stood on the doorstep in the cold night air, desperately trying to bring his temperature down.

"When we got to the hospital the emergency team quickly found that his white blood cell count was extremely high which meant he was fighting a major infection."

Samuel had meningococcal septicaemia type B. "We were shellshocked," says Angela. "You hear about meningitis in the news but never think it'll happen to you."

Samuel was given intravenous antibiotics and with each 24 hours that passed his chances of recovery improved. After ten days he was allowed home to spend Christmas with his family. But the nightmare wasn't over.

"We were unprepared for the side-effects," says Angela. "He'd been walking before he went into hospital but now he'd stopped. It was too painful. Eventually he could stand again but had to hold on to furniture like a baby. He walked with a limp because of the swelling on his foot.It took six months for him to regain full use of his limbs but the psychological impact lasted far longer. He became a completely different boy; he had mood swings and was aggressive. He'd kick, bite and punch. We were all utterly miserable. For months he screamed all the time. He hurt so much that the only way he could release his pain was to scream."

Nine months later the family went on holiday to Wales and Angela finally got the boy she lost to meningitis back. Today Samuel is a happy seven-year-old.

"He still complains of pains in his legs if the weather is damp but most other symptoms are in the past," says Angela, who is now a speaker on meningitis at mother and baby groups and a fundraiser for the Meningitis Trust.

"I tell new mums that a mother knows her child better than anyone and they should be aware of the symptoms, trust their instincts and never be afraid to seek a second or third opinion," she says.

"With your first child you're less confident in your instincts. If Samuel hadn't been my third son and if I hadn't had a supportive partner I may not have had the courage to phone for that vital second opinion." Angela is raising awareness of a new device designed to alert people to the signs and symptoms of meningitis and septicaemia. She says if she'd had the device she wouldn't have been so confused when Samuel showed symptoms of meningitis.

The Meningitis Arc, promoted by Bradford company Approach PR, is the first product to combine a representation of the septicaemic rash which acts as a detector' with a list of common signs and symptoms of meningitis and septicaemia.

Developed by JRBiomedical Ltd, with information provided by the Meningitis Trust, the Arc has been devised to improve awareness of symptoms of the disease. The reusable device, made of clear polycarbonate and shaped like an arc, lists common signs and symptoms such as high temperature, fever, possibly with cold hands and feet; pale, blotchy skin; and vomiting and diarrhoea, alongside a representation of the rash and a space to encourage replication of the tumbler test'.

"Meningitis can be a killer. Many people think this is no longer the case due to publicity over vaccines. However, vaccines are not available for all strains and people need to remain vigilant," says Sue Davies, chief executive of the Meningitis Trust. "Any activity which helps to responsibly raise awareness and understanding of the disease and prompt urgent action is a very positive step. The Meningitis Trust was pleased to provide the disease information for the Arc pack."

Dr John Rees, managing director of JRBiomedical Ltd which developed and manufactured the product says: "The Arc is a natural addition to the medicine cabinet and because it is compact it can easily be taken on holiday, in the car or be stocked by nurseries and schools. Like a thermometer or a first aid kit, it provides reassurance and information which can act as an early warning for anyone suspecting meningitis at any time." He adds: "The Arc is not a substitute for medical intervention and we urge anyone who suspects meningitis to see medical help immediately."

In a survey undertaken by the Meningitis Trust half the parents questioned couldn't name three signs and symptoms of meningitis.

Angela says the Arc will inform parents quickly of the early warning signs. "When Samuel fell ill I already knew many symptoms of meningitis, I just didn't realise that these could occur at any time and in any order," she says. "If I'd had the evidence in front of me I wouldn't have felt confused or uncertain. Parents need to make an informed decision in moments and the Arc will help them do that."

Fact File

• According to the Meningitis Trust there are approximately 3,500 to 4,000 reported cases of meningitis a year in the UK.

• Meningitis is an inflammation of the meninges - the lining surrounding the brain and spinal cord - and the most common cause is a viral infection which, although less severe than bacterial forms of the disease, can still be very debilitating.

• Bacterial meningitis is the least common but most deadly form of the disease and is always associated with serious and severe illness. Although after-effects and complications can happen with any type of meningitis, they are most common after bacterial meningitis.

• The Arc comes with a Meningitis Early Alert Pack containing information about the early warning signs of meninigits and septicaemia. One sign is a rash that doesn't fade under pressure. The Arc is designed to help identify this. A rash that doesn't fade will still be visible when the Arc is pressed firmly against the skin.

The Meningitis Trust was established in 1986 following a major outbreak of meningitis.

• The Meningitis Arc is available in Boots stores. For more information visit www.meningitisalert.co.uk
• To contact the Meningitis Trust ring (01453) 768000 or the helpline 0800 028 1828, or visit www.meningitis-trust.org