When nine-year-old Lexie McConnell was hit in the eye during a school sports day, she was unwittingly placed on a conveyer belt of care that ended in her death, writes Paul Harris.
Evidence from two specialists and leading medical texts suggests she was given too many steroids for too long - steroids that had not been properly tested on children.
Lexie died an "excruciatingly painful" death at Oxford's John Radcliffe Hospital after the steroids destroyed her immune system. If the specialists' evidence, published for the first time today, is proved in court, it could have huge consequences for the health service.
Lexie's treatment began after she complained of blurred vision in her left eye in 1992 after being struck by a ball. She was treated for the condition toxoplasmosis, for which steroids were commonly used.
Lexie, of East St Helen Street, Abingdon, was given 80mg a day of the corticosteroid Prednisolone. However, according to the British National Formulary medical guide, the highest recommended dose for adults is 60mg.
High doses were given to Lexie for more than three weeks - although some specialists say in usual adult cases it is advised to restrict treatment to one week.
Dr Leo Stimmler, consultant paediatrician and neo-natologist at Guy's Hospital in London, analysed the case as an independent specialist for the McConnells' solicitors. He said adults should normally receive between 20mg and 30mg for the first few days of treatment before reducing the dosage. Only in severe cases, he believed, should it go up to 60mg for adults.
In his report to the lawyers he wrote: "Nowhere in the literature of the last ten years have I seen anyone advocating the use of a very high dosage for three and a half weeks, as was prescribed for Lexie.
"This child had had non-progressive symptoms for eight weeks prior to her being seen at the John Radcliffe Hospital.
"Another 18 days passed before the decision was made to commence therapy. There are no comments in the notes which suggest there had been any deterioration in the appearance of her retinae over this 18-day period."
And he told the Oxford Mail: "I think the McConnells are extremely upset with the death of their daughter, which is not at all surprising. They feel they have been badly treated."
The 1996 edition of Ophthalmic Drug Facts suggests the safety of the steroids had not been established on children with eye problems before being given to Lexie in 1992.
It states the "safety and efficacy" of these steroids "have not been established in children".
Prof Gordon Dutton, consultant ophthalmologist in Glasgow, was another specialist whose advice was sought by lawyers for the McConnells.
In his report, he said doctors took the unusual step of seeking advice from colleagues in Great Ormond Street, who had not seen Lexie, before a prescription was made. He wrote: "It is common practice to use steroids for the treatment of ocular toxoplasmosis.
"However, a 'responsible body of medical opinion' would either not have given steroids or would have used a lower steroid dose for a shorter duration.
"This author would not at the outset have used steroids in this case, particularly in view of the risks outlined above."
Prof Dutton claimed he would have stuck to the dosage advised in the British National Formulary, and added: "The implications of starting these drugs are serious, and they should be used only when specifically indicated, in minimal dosage, and for the shortest possible time.
"Prolonged or continuous treatment is rarely justified. The treatment given did not accord with this advice."
After one week of steroid treatment, Lexie's parents believe she suffered abnormal side-effects such as facial swelling and headaches, and asked for an alternative treatment. But Lexie was not taken off the steroids.
The McConnells claim they were told the treatment should not be stopped once it had begun. Mrs McConnell told the Oxford Mail: "She put on a huge amount of weight, was trembling and had little holes in her tongue. She was so weak physically.
"She could not sleep. Any parent would have been horrified by what was going on."
She was taking 24 pills a day - a combination of antibiotics and steroids.
When doctors reduced Lexie's treatment after three weeks her eye problem had greatly improved. But her immune system was so low the clotting mechanism in her blood ceased to function.
She caught chicken pox and died shortly afterwards.
Dr Stimmler's report said: "In spite of the rarity of this occurrence, I think it is highly likely that this child's fatal chicken pox infection was due to the high dose of Prednisolone of which she was being treated."
He said Lexie was given a "massive" steroid dose that caused serious side-effects. He believed "more careful consideration" should have been given to the dosage. Lexie's father, Art McConnell, told the Oxford Mail: "They did not try to kill Lexie, but should have expected there to be possible serious conse- quences.
"She died an excruciatingly painful death. My child was destroyed by medicine prescribed by a leading teaching hospital."
The parents are currently pursuing a civil action against Oxfordshire Health Authority. The case is due to go to trial next year. A spokesman for Oxfordshire Health Authority said Lexie was on steroids which lowered her resistance to infections when she caught chicken pox.
She said: "It was an unpredictable, rare thing. The steroids were given to reduce the inflammation of a quite threatening eye infection."
She said the doctors were certainly not negligent and were distraught when Lexie died. "There is also a very heightened awareness of the risk, albeit rare, of chicken pox.
"We have all got very great sympathy for Mr and Mrs McConnell. We have done our best to provide an explanation but we cannot say we were negligent if we do not believe we were.
"We have got our doctors to look after too, who were also deeply distressed by Lexie's death."
SIX-YEAR BATTLE
The battle for a full investigation into Lexie McConnell's death has obsessed her parents for six years.
For Art and Victoria McConnell it has been a painstaking struggle to seek the truth that has left them battered, tired but still determined.
Mr McConnell said: "The campaign for truth and justice has kept me going. I think I might have perished without being able to use my intelligence to seek the truth.
"The health authority wanted to make our lives as difficult as possible.
"If you are going to make a complaint against the death of a child, the system locks up against you. Our only intention was to have a full inquiry." It is easy to understand their sadness. Lexie was a popular child, alert and with a bright future ahead of her. Any parents would feel the same.Mr McConnell, who suffered post-traumatic stress, added: "She was top of her year in school and she was very gifted and nice. She was very well liked."
But not many parents would have pursued a public inquiry with so much passion or drive for so long.
Last month, the McConnells and five other sets of parents whose children died under medical treatment asked the Prime Minister for a series of public investigations.
Before coming to power, Labour MP David Blunkett - now a Cabinet minister - pledged to fight the McConnells' case.
More than a year since the election victory, Lexie's file continues to gather dust. MPs TO DECIDE ON NEW INQUIRY
MPs will decide tomorrow whether to open an inquiry into Lexie's case.
The House of Commons health select committee has the power to launch an inquiry into a number of deaths under medical care.
If it does, Lexie's case will be one of a handful analysed by the committee of 11. Doctors at the John Radcliffe Hospital could be called to give evidence.
The next inquiry is due to take place this autumn. The committee would compile a report for the Government, which it must respond to within two months.
If MPs choose not to launch an inquiry this time, it could still be agreed at a future meeting.
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