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Wednesday, 26 November 2014

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First day at school for Cumbrian boy born with half a heart

Caleb Barnes looks like any other mischievous four-year-old – intent on having fun as he plays with his plastic dinosaur collection.

Caleb Barnes photo
Caleb with parents Trudi and Paul and brother Ned

But his first day at school this week was more of a milestone in this little boy’s life than you’d imagine.

For Caleb was born with only half a heart – and he is alive today thanks to the brilliance and dedication of NHS hospital staff.

In a series of three complex operations, surgeons at Freeman Hospital in Newcastle have quite literally “replumbed” his heart, redirecting major arteries and installing artificial ones to make it possible for the heart he does have to pump his blood around his body.

But after the latest operation on November 28, medics told his parents Trudi, 44, and Paul, 41, who works as a firefighter, that Caleb would not be allowed fatty foods for a minimum of six weeks.

That meant banning chocolate, cheese and butter, and turning instead to a diet that included 99 per cent fat-free biscuits and diet sausages.

As the end of his fatty food ban approaches, the youngster, who had his first day at St Herbert’s Primary School in Keswick on Monday, is looking forward to a celebration meal with his parents and big brother Ned, six.

And the main course will be his favourite treat – pizza.

Trudi recalled how the first hint there might be something wrong came when she was pregnant with Caleb and had scans at the West Cumberland Hospital in Whitehaven.

The true extent of the problem with his heart only became apparent when he was born at the Royal Victoria Hospital in Newcastle on February 21, 2008.

“The next morning they took Caleb over to the Freeman for a scan – and that’s when they found out he only had half a heart,” said Trudi, of Lupton’s Court, Keswick.

Caleb was born with hypoplastic left heart syndrome, which means the left side did notdevelop. Despite the seriousness of his condition, hospital staff remained positive, though for his first two and a half years Caleb had to be fed by a nasogastric tube.

“Now that has finished, in order for him to put on weight, if he asked for something he gets it,” said Trudi, adding that it was tough telling her son that he could not even have chocolate after his latest operation.

“One of the nurses even took his advent calendar away. But in the operation they can nick your lymph nodes. Then if you eat something with even a bit of fat in it creates 10 times as much liquid in your body.

“They’ve told us we have to reintroduce fat into his diet gradually and pizza’s all he’s been talking about. He loves it.”

Caleb’s doctors have told his parents that he can expect to enjoy 15 years of good health but may one day need a new heart.

In the meantime, thanks to the skill and care of the NHS, he can lead a relatively normal life.

“He’s as active as any child but it’s all in shorter bursts,” said Trudi. “There are things he can’t do. He can’t run for that long but he loves wrestling.

“We are just so proud of him. When he was little, we didn’t dare hope that he would ever make it to nursery and now he’s starting school and loving it.

“The NHS staff have been absolutely amazing. We’ve been given the best gift ever. We can’t thank them enough.”

Caleb’s parents are fundraising for Freeman Hospital’s Children’s Heart Unit Fund. Visit chuf.org.uk.

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