PARENTS

My Son Has A New Liver In Time For Christmas

04/10/2012 16:57 | Updated 22 May 2015

Joseph Hunsley and his family

After seven years of watching her eldest son struggle with an undiagnosed liver problem, Lynn Hunsley can finally enjoy her first Christmas knowing Joseph, eight, won't need to be rushed to hospital.

Stroking the arm of her fragile 1lb 12oz son as he lay in the incubator, Lynn Hunsley was engulfed by a wave of love. Joseph had been born at 31 weeks because Lynn, 45, had suffered with pre-eclampsia.

Along with his low weight caused by his early arrival, Joseph also had undiagnosed liver and kidney problems, which caused him to weigh as much as a 26-week-old.

Despite numerous tests, doctors could not establish the cause. All they knew was that Joseph had a scarred liver and his kidneys weren't working to full capacity. As a result, Joseph wasn't able to put on weight and was fed using a feeding tube.

After three long months, Joseph reached 5 ½ lbs and was finally allowed to go home.

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It was just before Christmas, says Lynn. It was the very best Christmas present I could have been given.

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Joseph was checked monthly by specialists and despite being small for his age and getting tired easily, he had no major problems.

Just after Joseph's first birthday, Lynn, a voluntary classroom assistant, fell pregnant.

"Doctors said there was a 50 per cent chance I would get pre-eclampsia again, but my husband Nick and I are positive people. We couldn't let that stop us having a family."

Unfortunately Lynn suffered with pre-eclampsia for a second time and her second son Andrew was born at 34 weeks weighing only 3lb 10oz.

"We knew there might be a risk with his health as well, but as Nick and I are so healthy we didn't think Andrew would have the same problems as Joseph."

The doctors tested Andrew and thankfully he was perfectly healthy.

"The boys get on brilliantly," says Lynn, 45. "They're like any brothers – playing and fighting with each other. We always tried to treat the boys the same. We didn't want Joseph to feel like he was missing out. 'You can do it,' we'd tell him whenever he wanted to play football or ride his bike, but he did get tired more quickly."

Although they had to remind Andrew that although he was the youngest he was actually the biggest brother in weight and height so he had to be more careful around Joseph.

Then in 2009, Joseph's tummy began to swell. It soon became apparent his spleen was over working and had become enlarged, pressing on his tummy causing him pain when he ate. He also had varicose-like veins in his oesophagus, so in November he went into hospital for two weeks to have them banded to stop the bleeding.

For the next year, Joseph had to go to hospital every three months for a similar operation, often staying in for five days at a time.

"It was then the doctors began to talk about a liver transplant," says Lynn. "We were shocked, but we knew we'd rather he risked the transplant and was healthy than watch his health deteriorate.

"We explained to him what was happening the best we could and we got a lot of support from the Children's Liver Disease Foundation], but he never fully understood that for him to get a new liver, someone else would need to die."

On the 5th July 2011, the Hunsley's got a phonecall at 7am in the morning. They were told to be at Leeds General hospital by 11am as there was a new liver available for Joseph.

"We dropped Andrew at my mum's and jumped in the car," says Lynn. "Joseph had a series of blood tests and X-rays and then we heard that the helicopter carrying Joseph's new liver had landed."

Joseph went down to theatre at 6.30 that evening with his favourite teddy bear Rory.

"We told him we loved him very much and that we were going to be here," says Lynn. "He was used to going under anaesthetic so he wasn't too worried. He just kept asking if he was getting a new liver."

Lynn and Nick, 42, an engineer, went back to a family room provided by the hospital and tried to get some sleep.

"Those 10 hours passed in a blur," Lynn explains. "I felt like I was looking down at the situation from above. Nick and I tried to stay positive and tried to think about all the things we'd be able to do when Joseph was well like go for an overnight trip without having to fill the car with all his medication and equipment."

The operation went brilliantly and Joseph came home after three weeks and four days. He had to have a feeding tube at night to get his weight up for the first three months, and despite being on a cocktail of anti-rejection drugs, aspirin to thin his blood, steroids and antibiotics, Joseph is happier and more energetic than ever.

"I can see he feels better in himself and has more energy. Now we're looking forward to the future, especially Joseph's first Christmas of not being ill. We're planning on visiting family in Scunthorpe so Joseph can see his aunts and uncles and cousins because all the years previously he's been too poorly to go and we've never wanted to be too far from the hospital.

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I feel sad that someone had to die to give our son a chance at a better life - apparently it was a young man in his late 20s. We've written the family a letter of thanks, which the hospital will pass on if the family wants to get in touch. I know it will be a hard Christmas for them this year, but hopefully they will find some solace in the fact our eight-year-old son can enjoy it more than ever.

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