The story of Lexie McConnell's death has the horrifying inexorability of Greek tragedy, chilling to the heart of anyone with a child. Lexie was nine. She was a happy, bright and extrovert girl. Her parents nurtured and protected her, as good parents do. But they were powerless to save her. In trying to do the best for her, they were led to do the worst. She died because her immune system had been destroyed by drugs her mother gave her on the doctor's orders for a minor eye infection, crushed and mixed with honey to make them more palatable.
What makes it so terrible is that they knew something was gravely wrong and struggled against the reassurances of the medical profession. They are still struggling - for an admission that doctors got it wrong, and to safeguard the children of the future.
Lexie's parents say it is surprising they are still alive. Her father, Art, was once a successful violinist. Now he plays only for friends. Eight years after his little girl died, his face is marked with grief even when he smiles. He cannot relate the way she died without breaking down. Lexie's artist mother, Vicky, is calmer, but tells of the unspeakable horror of the realisation that she, under doctors' orders, may have fatally damaged her child.
For the first time, they feel able to tell their whole story, following the lifting of a "gagging order" agreed between their lawyers and the lawyers for the hospital where Lexie died. They were given £100,000 as an out-of-court settlement of their legal case against the Oxfordshire health authority and the John Radcliffe Hospital, but with some stringent conditions attached - not to talk to the press and not to pursue their complaint to the General Medical Council against the doctors who treated their daughter. The health authority and the NHS Litigation Authority vehemently deny demanding any sort of condition, saying the gagging agreement was offered out of the blue, drawn up by the McConnells' own lawyers.
Regardless, Art and Vicky McConnell do not intend to keep silent. They don't have the three things they want: an explanation, an apology and an assurance that no child will ever again be treated in the way that Lexie was. "We won't rest without knowing that all drugs used on children have been tested prop erly for safety," says Art. "I can see us carrying on for the rest of our lives."
The couple live in Abingdon, near Oxford, where they moved from Wales the year before Lexie died. Art had been head of strings at the College of Music and Drama in Cardiff, but wanted to be nearer London. Lexie, whose given name was Alexandra, had got over her homesickness, had loads of friends, was top of her class at school and was showing a talent for the piano, says her father.
In July 1992 at sports day she was hit in the left eye hard with a tennis ball. She was crying and in pain for about 20 minutes and her vision was blurred, but then she recovered. Nobody thought any more about it. "We were on holiday in August on the Isle of Wight and Lex said to me one morning, 'Dad - I've got a bit of blur in my left eye'," says Art. "She'd discovered it because she and her friend were playing opticians and they were reading an eye chart that they had drawn up.
"It sounds so extraordinary, the whole thing. Two months later she was dead, and this is how it started."
The GP sent Lexie to a consultant paediatric neurologist at the John Radcliffe Hospital in Oxford rather than an opthalmologist, in case the problem was not with the eye at all. But a brain scan and a lumbur puncture showed nothing. The consultant decided something was causing inflammation, probably congenital toxoplasmosis - an organism that can damage the retina.
The consultant prescribed steroids and antibiotics. Art knew somebody whose face had swollen up on steroids and asked if there were any side effects. "He said any drug can have side-effects, even paracetemol," says Vicky.
Lexie was put on 80mg a day of the steroid prednisolone. The British National Formulary - the prescribing bible used by doctors - recommended at the time a maximum dose of 60mg for adults with serious disease, and that only for short periods with a reduction in the dose after a few days. Like most drugs, steroids are not licensed for use in children. Doctors have to use their judgement based on the information available. Much of that information is provided by drug manufacturers after clinical trials. But few trials are carried out on children.
Lexie was put on 80mg a day for three weeks and five days. She was also taking 4g a day of sulphadiazine and 25mg of pyrimethamine. Both antibiotics are recommended for toxoplasmosis - unlike the steroids - but can affect the liver.
It isn't easy for a nine-year-old child to take 24 tablets a day, and some of them were large. "They were like horse pills," says Vicky. "I had to crush them up in honey. It was a Friday when she had her first prescription. Within 24 hours she was feeling very nauseous and had a terrible headache."
She gestures to the green sofa where Lexie lay all night, in case she wanted to be sick. "She was on the sofa, and I was sitting in the chair next to her trying to get some sleep and I looked and I could almost see her face swelling. I thought - poor kid - after all this and she's got mumps."
It wasn't mumps. The next day Art was immediately convinced Lexie was reacting to the drugs. They called the GP, who agreed that might be the cause of the swelling, but said he would check with the consultant. Art and Vicky phoned every day for an answer. Eventually, a week after Lexie began taking the tablets, Vicky went to the surgery where a locum called the hospital and got confirmation that the prescription was right. Who from, Vicky does not know. They asked more than once whether Lexie could stop taking the pills, but were told it was dangerous to give up steroids. The body goes into shock unless they are withdrawn gradually.
Lexie had hardly been to school since she started the drugs. Sometimes she felt too ill. Sometimes she would say she was well enough in the morning, only to be sent home. She was lethargic and put on a gross amount of weight to the point where her father could no longer lift her. The consultant confirmed that she was "cushiongoid" - that she had swollen up as a reaction to steroids. Her parents were eaten up with anxiety.
"At one point I was so upset I threw the whole lot of pills across the kitchen and said I can't do this," says Vicky. Art picks up from her - they pass the story from one to the other. "I put her to bed and I said Vick, it is almost as if we are poisoning our own child. She said yes, I know."
"We were trying not to upset each other," says Vicky. "Right from the moment they are born, you feed them the right things and give them vegetables and wash your hands after you have been to the loo and yet we felt we were the ones who were poisoning her."
After one of the weekly visits to the consultant, Lexie complained of stomach pain. It got so bad she couldn't walk. When the GP arrived, he prodded her stomach and suggested it was constipation. In fact, she had the liver disease hepatitis.
Vicky rang the surgery again in the night and the on-call GP had Lexie admitted to hospital, but the constipation diagnosis went with her. The hospital doctor told the couple to go home and leave Lexie. "She was nine years-old and frightened. I wasn't going home," says Vicky. "That really put his back up. He thought he was looking at a spoilt brat making a fuss because she was constipated. She was crying in pain. I went to the doctor to tell him and he turned his back on me." At the inquest, he apologised. He was not the only doctor to dismiss the parents' anxieties. A consultant paediatrician the next morning wrote in Lexie's notes: "Neurotic mother winding up child."
By then, spots were rapidly spreading across Lexie's body. This was no rash. Lexie's parents had a meeting with her consultant and another paediatrician. They were told their daughter had a herpes infection that could be a cold sore or it could be chicken pox. Either way, the virus had spread throughout her body and her damaged immune system was struggling to fight it off. The doctors told them she could die. Lexie went into intensive care. She was bleeding from every orifice, but still cheerful. She was not allowed to eat or drink, so she asked for a tin of banana milkshake by her bed as something to look forward to for when she recovered. It wasn't to be.
"It got worse and worse," says Art. "The consultant came in one time and I said to him very gently, 'This is madness. We brought in our child for a relatively minor eye infection and she is fighting for her life'." That night, Lexie died.
One good thing came out of her death - a warning was issued that chicken pox can be fatal to those on steroids after the coroner pointed up the danger at the inquest. But, says Art, anything could have killed Lexie. Her immune system had been destroyed. And then there was the liver damage and the possibility that the blow to the eye may have caused the blurring, which would have cleared up without treatment.
The McConnells blame the arrogance of doctors, who they say would not listen to them. They allege their daughter was given an overdose of drugs that were not generally recommended in the medical literature for toxoplasmosis. They have joined the growing numbers of parents and doctors who want to see medicines properly tested and licensed for use in children. The chances of it happening are slim. It would cost pharmaceutical companies a lot of money to carry out those tests. While doctors are willing to prescribe drugs "off label", there is no incentive.
The McConnells have harried the Oxfordshire health authority and the Oxford Radcliffe hospitals NHS trust and were at one point offered an inquiry. They turned it down, because, they say, it would not have been public and they could not have put the questions they wanted to the doctors.
The McConnells sued for post-traumatic stress disorder in hopes of having their case heard in public. They were given £100,000 without a hearing. The health authority says the money was paid rather than incur the costs of a court case and to end the stress on its medical staff. In a statement it said: "The health authority has at all times maintained, and does maintain, that Lexie's death was not caused by any negligence or want of care on its part."
It won't end there. The McConnells are now taking their complaints against the doctors to the GMC. "The obsession for justice and fair play for your child is overwhelming," says Art. "You feel as a parent not just that you are being betrayed, but your child is being betrayed by dishonesty."
The medical profession may say it is reforming itself and opening up to the public, but it has failed to answer parents' demands for an investigation into the prescribing of medicines to children. Until parents like these can feel they have been dealt with fairly, it has a long way to go.