Page last updated at 03:23 GMT, Monday, 15 September 2003 04:23 UK

Laura's legacy: 10 years on

Laura Davis was born with a withered bowel
It is approaching 10 years since the death of Laura Davies, a five-year-old girl who had travelled to the US to undergo pioneering transplant surgery.

At the time, the operation was not available in the UK - but have the prospects for similar patients improved in the past decade?

The case of Laura Davies struck an instant chord with the public when her story first came to light in 1992.

Despite her smiles, her jaundiced face betrayed the fact that she was running out of time fast.

Laura, from Eccles, Greater Manchester, was born with a condition called gastroschisis, which meant that she was unable to digest food. Just keeping her alive in this condition produced an intolerable strain on her liver, which also began to fail.

At this stage, doctors told her parents what they had been telling such parents for decades - that there was little they could now do for her.

Except, in Laura's case, there was a twist - US surgeons were pioneering an operation to transplant both the liver and the small bowel simultaneously.

Saudi gift

Going through with the procedure would mean uprooting the family and travelling to Pittsburgh - and the NHS were unprepared to pay for this.

But the moment that Laura's face appeared on television screens, the money began to pour in.

More than 750,000 was raised - including a 150,000 donation from King Fahd of Saudi Arabia - and Laura made the trip to Pittsburgh.

Laura
Laura showed improvement after the first operation
She underwent a 16-hour operation, in which a liver and bowel from a girl from New Jersey were transplanted, and initially, all appeared to be going well.

The jaundice disappeared, and Laura's health rapidly improved.

However, the improvements were short lived - the high doses of anti-rejection drugs allowed cancer-like growths to develop on many of her organs.

Just a year later, she was back in hospital in Pittsburgh - but this time, doctors wanted to transplant not only her bowel and liver, but also her kidneys, stomach and pancreas. It was the most ambitious multi-organ transplant ever attempted.

This time Laura did not recover from the operation, and died on 10 November, 1993.

Dr Andreas Tzakis, who led the team carrying out the transplants, said: "I think Laura came very close to making it."

UK programme

Laura and her family's battle was over, but the fact that she had been forced to travel to the US for treatment had prompted a sea change among specialist units and the Department of Health.

One of the UK's leading units, at Birmingham Children's Hospital, applied for, and was given, funding to specialise in similar operations.

Professor Deirdre Kelly, who helped set up the Birmingham programme, is certain that it was publicity surrounding Laura which led to its creation.

She told BBC News Online: "Laura Davies was the trigger for all this - and for her parents it will, hopefully, be a very positive thing to know that because of this money, other children have benefited."

We find that we can manage the condition of many of these children better - so that they don't actually need a transplant.
Professor Deirdre Kelly, Birmingham Children's Hospital
Birmingham remains the only centre in the UK which carries out liver and bowel transplants in children, and thankfully, it is still a rare event.

Of the 100 children referred with Laura's condition in the past 10 years, fewer than two dozen have actually required such an operation.

Advances in surgical skills mean that 60% of these are alive and doing well.

Professor Kelly now believes that the UK has, in a decade, caught up the US, which had been carrying out such operations for five years prior to 1992.

In some areas, she thinks, the UK is even doing better.

"We find that we can manage the condition of many of these children better - so that they don't actually need a transplant," she said.

"There have been big improvements in anti-rejection drugs, and in the way we use them."

Experience

Catherine Arkley, chief executive of the Children's Liver Disease Foundation, said the prospects for children with similar problems had improved vastly over a short space of time.

"The teams in this country now have quite considerable experience in dealing with these kinds of conditions.

"My instinct says that this would have happened anyway, regardless of Laura Davies - but it is likely that the case increased the desire to do it quickly."

The teams in this country now have quite considerable experience in dealing with these kinds of conditions.
Catherine Arkley, RChildren's Liver Disease Foundation
Many at the time suggested that money spent on carrying out the transplant would be better spent elsewhere in the NHS.

However a study suggested that while the operation was expensive, it actually cost the NHS about the same as doing nothing, such was the huge price of looking after a child terminally-ill with this condition.

The surgeon who led the efforts to save Laura Davies said that, in hindsight at least, the operations she had endured in a attempt to save her may have meant "unnecessary pain".

What is undeniable is that Laura's struggle helped those who followed to be treated - successfully - in the UK.

But she did not spell an end to cases in which desperate parents are prepared to do anything to grab even the slimmest chance for their desperately ill children.

Only this week, Darren and Debbie Wright from Herne Bay, Kent, left their home to travel to Houston so their daughter could receive an experimental treatment for a cancer pronounced terminal by every UK expert.

The odds of a cure are described as "a one in a million" by Debbie herself - yet the couple have remortgaged their home to look for it.



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