Amazing Grace

They had been told that Grace, their two-year-old daughter who had suffered from a rare liver disorder since birth, would die unless she got an urgent transplant and Victoria and Tom, who had watched their daughter's condition deteriorate, were at the end of their tether. But as Tom, a City banker, took the call in their Fulham house, and the voice of a slightly intoxicated friend just wanting to say "hi" boomed down the line, hope turned to crushing disappointment.

It would be another three months before the transplant co-ordinator at King's College Hospital would call and tell Victoria: "I think we have found a liver for Grace". But it, too, would be the start of a rollercoaster ride as they were told the liver was "no good after all" and were sent back home to wait for another suitable organ.

Grace was lucky. A good liver came in the nick of time and today she is a sprightly four-year-old who clambers on the sofa with her seven-year-old brother, Charlie, and three-year-old sister, Rosie. But for more than 500 people a year, the severe shortage of organs has fatal consequences.

To remedy this situation of "unnecessary deaths", Sir Liam Donaldson, England's chief medical officer, will this week advocate a radical shake-up in the way we, as a society, donate organs. Backed by Gordon Brown, Donaldson is calling for a system of "presumed consent", whereby everyone in Britain is presumed to be a donor unless they have specifically opted out, to replace the present system where you have to actively opt in. Presently 9,000 people are waiting for some form of transplant in the UK, of which just 3,000 are likely to get one in the next 12 months. For up to 500 people a year, a suitable organ will come too late.

Victoria, 42, welcomes the proposed new system as "long overdue". She says: "If this country had presumed consent, we would have got a liver for Grace almost immediately because there would have been no shortage. We wouldn't have gone through the trauma that her turn would never come, that we'd lose our daughter."

Telling her story for the first time, Victoria says that for three years, the preoccupation of saving Grace took over their lives. It meant never being more than 45 minutes from a London hospital, keeping her mobile phone on at all times, postponing their house move (they recently relocated to a fivebedroom Queen Anne country house set on three acres in Surrey), and leaping up whenever anyone phoned at vaguely unsociable hours.

There was no sign of the trouble ahead when Grace was born at Queen Charlotte's Hospital in west London on 17 July 2003, weighing nine pounds. Like many babies, she appeared jaundiced, but was signed off by the health visitor after two weeks. At 10 weeks, Victoria, who had quit her job as a marketing consultant to be a stay-at-home mum, began to feel concerned that Grace wasn't feeding or sleeping properly, so she took her to the nurse who took one look at her, pronounced her "severely jaundiced" and referred her to King's College Hospital, which specialises in liver disorders.

The diagnosis, when it came, was devastating. Grace had a rare condition called Biliary Atresia, a non-genetic potentially fatal liver disorder that affects one in 14,000 babies and which, if left untreated, meant Grace would die before she turned two.

"I just thought, 'why us?' says Victoria. "You don't think horrific things like that will happen to you."

Doctors proposed a four-hour operation called the Kasai procedure, essentially a liver bypass to insert a drainage channel to allow bile (essential for digesting fat) to drain from the liver to the gut, but if it failed - and they wouldn't know the outcome for months - Grace would need a liver transplant.

At first it seemed the Kasai operation, which she had in October 2003, had been a success as Grace recovered quickly. But six months later she was plagued by secondary illnesses like pneumonia and had to be hospitalised. By now Victoria was 29 weeks pregnant with Rosie and struggling to cope.

The following year, in 2005, Grace was hospitalised a further four times, this time with cholangitis, an inflammation of the bile ducts requiring urgent treatment, and with Grace spending 45 days in hospital, Victoria took sixmonthold Rosie and five-year-old Charlie and moved into a camp-bed beside her. "We lived and breathed Grace," she says. "Her condition took over our lives."

By now Grace looked painfully thin and had a grossly distended belly due to her abnormally enlarged liver and spleen, symptoms that pointed to the Kasai procedure having failed. But it was only when Victoria asked the consultant whether the distended belly would persist - worrying, because she did not want Grace to be teased at school - that the consultant said: "If she still has this tummy by the time she goes to school, she won't be alive." That was when it dawned on those involved with Grace's medical care how urgently she needed a liver transplant. Her chances of survival were high - 90 per cent survive the first year, they were told - but a shortage of organs meant a wait of up to a year. "We knew there was a real chance Grace might die waiting," says Victoria. "I was positive from the start but Tom was eaten up with worry."

It didn't help that Grace had them up most nights with diarrhoea and with acute eczema that left her scratching herself to pieces. Then her fingernails fell off. A girl in the park commenting on her fluorescent skin-tone asked: "Why is that girl so green?" To top it all, Grace was diagnosed with portal hypertension - high blood pressure in the vein carrying blood to the liver - and which can lead to fatal heart failure. "It was the hardest time," says Victoria. "We weren't sleeping and every time anyone called late at night, our hopes soared. Nobody would tell us how far off the top of the waiting list Grace was and after six months of living day by day, you start to think it's never going to happen. "

Then, in May 2006, Victoria took a midnight call from the transplant co-ordinator at King's College Hospital that sent her pulse racing. But when Victoria and Grace got to the hospital, they waited nine hours only to be told, "sorry, the liver wasn't right - best go back home". "I can't describe the desolation," says Victoria, her eyes reddening. "To feel so elated and then so flat and empty."

But while she was having coffee with a friend in Putney the next morning, Tom called to say the hospital had been trying to reach her and to "go home immediately". "I literally got home and leapt straight into the back of the ambulance and we were blue-lighting it across London. This time, they admitted her within seconds," she says.

"I was euphoric. It was finally going to happen. Tom and I couldn't stand waiting, so to distract us we went shoe-shopping on King's Road."

Seven hours later, Grace emerged with a new liver and an eight-inch scar that her brother, Charlie, would jokingly tell his friends was "from a shark attack". Although Grace will be on immunosuppressants and low doses of steroids for the rest of her life, and must have monthly medical check-ups, she hasn't looked back. "She was behind her peer group developmentally but since her transplant she's had a growth spurt and she's now bang on track and is just like any other four-year-old," says Victoria. "As for me, I just feel so relieved to be doing normal things, like the school run, or birthday parties, instead of sitting endlessly in hospitals." For the doctors on the NHS who saved Grace's life, Victoria feels only gratitude. "They were just incredible. Tom ran the Three Peaks Challenge and raised £90,000 in a sponsored walk for King's College to try and give something back."

Victoria was never told the identity of the donor, just that it was a "young person", and in November 2006, she wrote what proved to be a difficult letter: "to thank the family for whom the death of their child meant the gift of life to our little daughter".

How much did they tell Grace? "We were very open with her and the other children. We'd often discuss that she was going to have her bad liver taken out and a new one put in. She's very proud of herself and knows she's a bit special."

Earlier Grace had bounced up to me and introduced herself. But instead of saying: "I'm Grace," she had extended her hand and announced, "I'm four!" It's as if Grace knows what a huge achievement reaching four really is.