Emma Sutcliffe is determined that other parents should learn from her tragic experience.
'Noneof us thinks that there's any disease in Britain in 1993 that can wipe you out in hours. You think you've got time. I think people ought to know, because had I known what the symptoms of meningitis were, Ralph would probably be here now. Ralph did have a chance somewhere along the line, and it was missed.'
In fact, Emma was as clued up about the symptoms of meningitis as the next person. She knew it is an inflammation of the brain lining which can cause a very high temperature, headaches, muscle aches, vomiting and dislike of bright light.
'But knowing thosebasic symptoms didn't help one iota. Ralph was sitting upright in his high chair one moment, having been normal all day, and the next moment he keeled over like a rag doll, and let out this little high-pitched moan, which, as I later discovered, is a common symptom in babies. Then there was this dreadful silence.
'He didn't have a temperature, because he was in shock. He was shaking and panting and his heart was racing. He was staring straight ahead, as if in a trance. All I knew was that something very dramatic had happened to him - I thought he must have eaten rat poison or something. It wasn't until I looked in books afterwards that I found that every symptom he had was classic.'
Emma rushed her son to the GP, who dismissed the problem as a tummy bug. When she rang an hour later to say Ralph's temperature had risen and he was vomiting, he prescribed Calpol.
As a result, Emma and her husband, Andrew, wasted precious hours nursing their dying son through the night, until at 5am they noticed a large black mark on his hand. They ripped open his pyjamas to discover that he was black and blue all over. Emma remembers: 'I kept saying to Andrew 'I hope it's measles' but I knew it wasn't. I knew he was very ill.' By the time Ralph was admitted to South Cleveland Hospital, the infection had progressed so far that he hardly had a chance.
Emma remembers the terrible hours when she watched her son floating between life and death: 'He fought so hard, poor little boy. He was conscious all the time. He kept talking to us, and even when he was at death's door he pulled himself off the bed and threw himself into my arms. At the end they had to almost shake us and say he was going to die, because you just don't believe it will happen.
'You go into a sort of black never-never land where you're completely numb. We were very lucky that we were allowed to bring him home. Our instinct was, we didn't want anyone else to touch him; he'd had such a terrible time and we just wanted to take him away and wrap him up. It's a most extraordinary feeling, having been saying, 'Quack quack]' and 'Tractor]' to your little person hours before and then going home in your car with him dead. That's something you never quite come to terms with.'
Tomorrow night, a Channel 4 documentary, which was inspired by the Sutcliffes' experience, will help parents to know more about the symptoms of meningitis and the often alarming speed of its progress.
The disease, which causes on average 40 deaths a month and peaks in the winter, takes many forms. The success of the immunisation programme against one form, commonly known as Hib, has reduced infections by 70 per cent since its introduction last October. But its success has disguised a steady rise in cases of a more deadly form, meningococcal meningitis, which accounts for about 50 per cent of all meningitis cases.
The film traces the progress of three desperately ill children and their parents at St Mary's Hospital in West London, a national centre for research into meningococcal disease.
Last year it opened one of the few rapid response units in the country. A specially equipped ambulance, manned by a consultant and a nurse, rushes intensive care to critically ill children within a 76-mile radius and transports them back to St Mary's. The patients are usually in hospitals which do not have facilities to treat them. The documentary makes gruelling viewing and raises uncomfortable questions about the ability of the health service to respond with adequate speed and appropriate care to a disease which can be fatal within hours.
Since January, when Emma Sutcliffe started campaigning for the charity Meningitis Research, she has received 60 letters from bereaved families who believe the system failed them. Like them, Emma is haunted by a sense that she could have done more to save her son: 'Your instinct is that you should have known, you should have protected your child. That's a terrible thing to have to live with. I was saying all the right things to the GP, but I didn't have the confidence, because I had no framework for all these symptoms. And I had no idea how knife-edge everything can be.'
Emma blames Ralph's death on bad luck and the disease rather than the GP who, like many doctors, may never have seen a case of meningitis before. Nobody knows why Ralph developed it.
The disease is almost impossible to diagnose in the early stages, when the symptoms can be indistinguishable from flu. One of the distinguishing characteristics, a rash of pinprick red spots which soon develop into larger purple marks, appears later, and only in some cases. Emma's view is that if there's any possibility of meningitis or associated infection, doctors should refer patients to hospital - something which GPs are under increasing pressure to avoid. The onus is therefore, she believes, on parents: 'Knowing that things can go wrong and delays can occur, I think parents have a role to play. If you're aware, and it does happen to you, at least you're equipped to push.'
Emma has already been contacted by six parents who, thanks to hearing about her experience, knew immediately that there was something wrong with their child and acted promptly to save their lives. She now hopes to raise public and medical awareness on a much broader scale through her involvement with Meningitis Research. Working 12 hours a day for the charity is her way of coping, she says.
'I won't ever get over Ralph's death. I wake up and cry every morning, and I go to bed and cry every night, and I'm completely ruined inside. My life will never be the same again. But working for the charity has given me a new direction. It's a new way of channelling all that grief into something positive.'
The Sutcliffes are expecting their third child at the end of this month: 'Having another baby was a question of just taking a deep breath and not thinking about it. There's never going to be a replacement for Ralph. But it's good, it's a future.'
Cutting Edge 'Cries of Alarm', will be shown tomorrow at 9pm on Channel 4.
Meningitis Research, Old Gloucester Road, Alveston, Bristol BS12 2LQ (Tel: 0454-413344) runs a 24-hour Helpline on the same number for anyone who wants information or advice about the disease.
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