It is what every parent dreads hearing. The consultant walked up to Denise and Andrew Hodges as they sat by their son's bedside in hospital and whispered: 'I have some bad news for you.'
They had been told for the last three nights to say goodbye to their son Darren, who at the age of 18 months had been gripped by the most vicious form of meningitis, a complex infectious disease that strikes people so quickly they can be brain dead before the ambulance has taken them to hospital.
Darren had been unconscious in intensive care for days, and was black and blue from head to toe, his veins so full of holes that nothing could be done to stop his blood pouring out under his skin. He had kidney failure, liver failure and his heart was so weak it could have stopped beating at any moment. A brain scan had shown he had been bleeding inside his skull, causing brain damage.
'We just thought "Oh my God, this is it",' said Denise. 'We knew what the doctor was going to say.'
They were wrong. The doctor told them that Darren would probably live, but that they would have to amputate his leg below the knee. His leg, with the blood supply cut off from internal clots, had simply died. 'We were just really grateful he survived. He was so poorly, we're just very lucky to have him,' said Denise, a library assistant from Hereford.
Darren lost half of one leg, and the big toe of another, and is covered in severe scars. The brain damage turned out to be very mild: he only has a little trouble reading and writing. 'He's a very brave boy, he even does gymnastics,' said Denise. 'I still go upstairs and cry. I don't think you can ever accept it. I still get really upset talking about it - why was it him?'
Darren, who celebrates his tenth birthday later this month, is one of the growing army of meningitis survivors, the often hidden victims of a disease which is increasingly being vanquished by modern medicine.
The new vaccination given to young people means that one form of the bacteria - meningitis C - has been almost wiped out in the UK. Earlier detection and better treatments mean that those who do get the disease are twice as likely to survive than they were a decade ago, with death rates now down to around 10 per cent.
But, despite these breakthroughs, there are still some forms of the disease which are not controlled by vaccination and many of those who do survive are often left with horrifying disabilities. Meningococcal septicaemia - a severe form causing blood poisoning and gangrene, with devastating after-effects - has risen from 229 cases in 1989 to 1,822 last year.
'There has been a massive increase in septicaemia cases - it's something that all the hospitals have noticed. Part of it is better detection, but no one really knows why,' said Linda Glennie, head of research at the Meningitis Research Foundation.
Brain damage, deafness, blindness, epilepsy and speech loss are typical side-effects. Kidney and liver damage is frequent, often resulting in the survivors needing organ transplants. Many will suffer severe and widespread scarring, and around one in 30 will suffer amputation, often multiple. Some survivors lose both arms and both legs.
Meningitis is inflammation of the meninges, the lining of the brain. It is caused by a bacteria which can affect the body in several different ways. In the septicaemia form, it causes blood poisoning, ripping away at all the vital organs until they simply fail, and punching holes through the walls of the veins. It can also end up producing blood clots, so that no blood can reach the extremities of the body, which in turn can lead to gangrene.
Meningitis is one of the most devastating infectious diseases to afflict modern Britain, striking so quickly that children go from paddling pool to intensive care - or the mortuary - in a matter of hours. It has long been the leading infectious killer in Britain - killing around 200 people a year - with about half its victims under the age of four. But with rising numbers of survivors, meningitis is now also becoming a leading cause of both physical and mental disability.
Joseph Britto, a consultant at the country's largest meningitis unit at St Mary's Hospital in London, is at the forefront of the battle against the disease. The new vaccine has meant that the number of cases brought to the unit from around the country has fallen in the last couple of years from 100 to around 60, and better treatment means that the death rate has fallen to just two per cent - around the best in the world. Because of higher publicity about the disease, parents and GPs are detecting it earlier and getting people to hospital quicker. New drugs and techniques have been developed.
'We've become so much better at resuscitating kids, there's so much more we can do for them than ever before,' said Britto. 'But, although those kids might come through, what we can't do is bring them through intact. It's such a devastating disease there are often severe after-effects.'
Glennie said: 'By rescuing children who would otherwise die, we have far more kids alive with amputations. Even kids who don't end up with brain damage often end up with some softer intellectual damage - such as problems with memory, co-ordination, or learning abilities.'
There is often little that can be done to mitigate the after-effects of the disease. Children are given given hearing aids, and special teaching. Those with amputations are given artificial limbs and physiotherapy but, though medicine has saved many lives, life for survivors is not easy.
Patrick, son of The Observer business editor Frank Kane, was unconscious for three weeks in intensive care, one of the worst cases that St Mary's Hospital had seen, and without doubt was saved by recent advances. 'If Patrick had been in the same unit three years before, he would almost certainly have died,' said Kane.
He pulled through, but with the right leg amputated below the knee, all the fingers on his right hand cut away at the middle knuckle, and his left hand just a stump with no fingers or thumb at all.
'He is inspirational, but he will always have problems. He can play perfectly, feed himself, draw and write. But he has problems going to the toilet by himself, and has to be helped to get dressed,' said Kane. Patrick, now four and a half, attends a normal school, but while advanced prosthetics means he has a leg that allows him to walk almost normally, there's nothing that can be done for his left hand.
'It's a stump that he can only really use to put pressure on things, or grip things against his chest,' his father said. 'But as medical science stands, there's little that can be done about this - they can only put a cosmetic hand on, but they can't give him a hand he can use.'
The after-effects of meningitis often come back to haunt victims later in life. Darren grew up with one prosthetic leg, and has learnt to swim, climb and play football. But even now he is not free from the continuing effects of the disease. The shin bones in his one remaining leg have been growing at different rates, making his foot crooked. Three months ago, he had an operation to straighten his leg, but it is still in plaster and he needs a wheelchair.
Sometimes the children survive in such a bad state that heartbroken parents are simply left wondering whether it was worth it. There are also times when doctors accept that the child will suffer severe brain damage and let the child die. One parent, whose child suffered multiple amputations, and who wished to remain anonymous, said: 'Medical science has been too smart for it's own good. Is it right to keep people alive when they are going to survive so badly? In moments of bad depression, I wonder whether it would be better if he had died.'
Having learnt how to cure meningitis, doctors are now concentrating their efforts on making sure it is worth surviving. St Mary's is undertaking trials of a new treatment with protein C, which initial tests suggest may reduce the effect of septicaemia, making amputation far less likely. Britto said: 'We've come a long way, but our challenge now is to learn how to mitigate the effects.'
For Darren, Patrick and thousands like them, such advances are simply too late.
