What turned into a nightmare for Jill and David Bettelley began at the end of February, one Saturday morning at their home in Worthing. Jill went to get Luke out of his cot. "He seemed very hot, and when I put him down on the floor he just collapsed," she recalls. "His eyes were rolling back in his head. We took him straight to the doctors and they couldn't find anything wrong." On the Monday, Luke's skin and the whites of his eyes started turning yellow. The next day they went back to the surgery. "We were getting upset but the doctor said he couldn't tell the colour of Luke's skin because of the surgery's magnolia walls," says Jill. "He said to come back the next day. When we did he said Luke had an ear infection and gave him antibiotics."
By now, Jill and David were becoming increasingly alarmed. David looked up Luke's symptoms on the internet and realised he had all the classic signs of liver failure or hepatitis. Finally the Bettelleys' own GP diagnosed Luke with jaundice and an enlarged liver and sent him to the local hospital in Worthing, where staff first suspected hepatitis. But by Sunday, Luke's condition was so bad that a team from King's College Hospital was called to stabilise and sedate the little boy before moving him to the specialist unit. Luke had become irritable and lethargic because toxins his liver couldn't process were affecting his brain. "We thought he'd be taken up to King's, given a couple of shots of medicine, and come home again," says David. "I didn't realise the seriousness of what was happening. I said to one of the nurses, `He's not going to die, is he?', and her face crumpled. I just thought, `Oh, God'."
Luke was put on a ventilator at King's, and given extensive tests and drugs to try to jump-start his liver, but his condition continued to worsen. By the weekend, the staff had begun to talk in terms of a transplant. David and Jill were shocked at the speed with which Luke had become so dangerously ill. "All of a sudden the world fell apart," says David, who works as a surveyor - the couple have been married five years and met when they were both special constables.
Chronic liver failure can take four or five years to reach the point where a transplant is needed but, with acute cases, the deterioration is terrifyingly sudden. No one could explain the reason for Luke's crisis; after the operation, says David, "they told me in layman's terms that Luke's liver would sit in a jar for 10 years and in 10 years' time they might know what caused it".
Luke was put on the list for a donor liver. David and Jill were told that, without a donor, he had about 48 hours to live. He was one of only two children in Europe on the acute liver failure list - and soon he was the only one, as the other child died shortly after. But even with a range across Europe, child liver donors come up very rarely. David and Jill asked if they could be donors - adults can survive with part of their liver removed and the organ eventually regenerates. "The doctors said `No way. It's never been done before'," says David. But soon after, they were asked if they really wanted to make the attempt. There was no guarantee that the operation would be successful. But they decided to go ahead - and, though tests proved that both of them were compatible donors for Luke, Jill insisted on being the giver. "From the outset Jill always wanted to do it," says David.
Jill says it wasn't a hard choice. "I think as a mother you have more of a bond with your child. I carried him inside me. The dangers didn't come into it at all. They told me there was a risk of one in 250 that I could die and I just thought `Well, you've got to go sometime'. I tried to think positive, to think that things would be all right. I was glad that I could do it, that we didn't have to wait on a donor - then I think I would have cracked up."
"We were told that our son was dying and that there was possibly something we could do about it," adds David. "I think most parents in a similar situation would do it."
The doctors at King's rushed to complete further tests on Jill. David brought her a Chinese takeaway that they called "The Last Supper". Then, on 5 March, around 30 per cent of Jill's liver was grafted into Luke, in an operation that took 13 hours. When she came round she was in great pain. "I had Jill in intensive care, I had Luke in intensive care," says David. "They were at opposite ends of the hospital and I was running between them, and there was nothing I could do for either of them." Over the next fortnight Jill lost a stone through pain and nausea. It was several days before she could struggle into a wheelchair to see Luke. "I'm a person who's always on the go and I couldn't move at all," says Jill. "My first thought was to go up and see Luke but I couldn't at first - the nurses brought me Polaroid pictures. I thought when I'd seen him he'd be back to normal; he'd be able to say `Mama' and give me a cuddle but he was still very ill and there was no recognition at all."
The family had a considerable wait to know if it had all been worth it. The first few weeks after a transplant are crucial - the time when the body is most likely to reject its new organ. Even the first year after a transplant is an uncertain time. Luke is currently doing very well, though there was a recent scare over a test that seemed not to be normal. He will have to take immunosuppressant drugs for the rest of his life; he can never drink alcohol, and he must avoid contact sports because his abdominal muscles are weak. But other than that he should be able to lead a normal life.
Meanwhile, Kyle was staying with his grandparents. It was tough for him too - he couldn't understand where his parents had gone. "Kyle didn't see us for about three weeks," says David. "It was very hard because we couldn't leave Luke." They travelled down to Kyle's fifth birthday party while Luke was having a further operation. "It was so hard trying to be happy for Kyle knowing Luke was up in London," he says.
When Luke came home, that wasn't the end of the story. He had lost ground developmentally because of the brain swelling. He had forgotten how to walk and had to be retaught. He had just started talking and had to start from scratch with that too. He didn't even know his grandparents - or their dog. "Effectively he'd never seen a dog before," says David. "We had to start afresh." Now Luke is rapidly regaining ground, and Jill too is feeling well again. "I'm happy all the time he's all right," she says. "That's what keeps you going."
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