Full of life – five years after parents told to say goodbye

Ben was just four-years-old and was suffering a rare heart condition and in dire need of a heart transplant.

Doctors in Leeds didn’t expect the youngster to live much longer and so urged his parents, Sean and Samantha, to say goodbye to their precious son.

“They said he wouldn’t survive the night,” recalls Samantha, from Tingley.

But thanks to advances in technology, Ben was put on the heart transplant list and in September 2006 the youngster went through a seven-hour pioneering operation to give him a new heart and save his life.

“It was sad that another child had to die to save Ben, but it was his only chance,” says Samantha.

And on Saturday the family held a surprise party for Ben to celebrate the fifth anniversary of his successful heart transplant.

Samantha even had a special cake baked with a heart on it to mark the occasion.

The family is also backing calls for under-threat children’s heart surgery units in Leeds and Newcastle to be kept open.

“I cannot believe that they are looking at shutting any of them. For families like us they are life-savers.”

A review is being carried out for the Government with the aim of driving up standards of children’s heart surgery which is becoming increasingly complex.

It will lead to new national quality standards, the development of children’s heart networks and pooling of surgical expertise. But will also mean the number of surgical centres will be reduced from 11 to six or seven.

And campaigners fear it will mean patients having to travel further for treatment.

A decision is likely to be made by NHS officials in November but the final say could rest with Health Secretary Andrew Lansley.

Ben was born with Wolff Parkinson syndrome, a condition which causes irregular and fast heart beats. This lead to him suffering from dilated cardiomyopathy, which left him with an enlarged heart after his tiny body was forced to work overtime.

The condition means the main pumping chambers of the heart are dilated and contract poorly. This results in a low output of the blood from the heart and features of heart failure, with build up of fluid behind the left side of the heart leading to congestion in the lungs and breathlessness.

Although Ben seemed quite healthy in himself, his heart was struggling and his parents were told he would need a heart transplant.

“Once Ben was diagnosed it was like being on auto pilot. We had two other children and Ben was spending a lot of time in the Leeds General Infirmary. It was really hard for us all.”

But as Ben’s conditioned deteriorated, doctors said he would need to be transferred to the Freeman Hospital in Newcastle as children’s heart transplants weren’t performed in Leeds at that time.

Samantha said: “ We honestly thought we had lost him. We were at Leeds General Infirmary and we prepared for the worst after doctors said time was running out. We thought he wasn’t going to make it.” They even asked about the possibility of donating Ben’s organs in the event of his death. Ben had been on the transplant list since April and was transferred to Newcastle in June, but a heart did not become available until September.

During this time Samantha and Sean had to take shifts between Tingley and Newcastle. “I would stay with Ben from Monday to Thursday and then his dad would take over from Friday to Sunday and that was how it went on for months. It was hard on the whole family.”

Ben was so poorly that he had to have a Berlin Heart fitted. A Berlin Heart is a device used in children whose hearts are no longer strong enough to pump enough blood around their bodies.

It supports the work of a child’s heart and helps to ensure blood is able to be pumped around the body effectively. It consists of a driving unit, air hose and pumping chambers which are outside the body.

Little Ben was on the Berlin heart for just over two months – normally children only stay on the machines for around a month as it can become difficult to remove.

Eventually Samantha and Sean got the call they had been waiting for. “We’d had a couple of offers of hearts before but they didn’t work out but this time the operation went ahead. We were delighted for Ben but sad for the other person who had died.” The operation to fit the new heart to the four-year-old took seven hours and saw surgeons working through the night.

“When we woke in the morning it was all done. We noticed straight away that he seemed pinker.”

In the first year after the transplant Ben spent seven months in hospital and was bedridden for most of the time.

Ben will need to take medication for the rest of his life and his parents are aware that he may need future surgery as the average life of a heart transplant is ten years.

He is also prone to more chest infections that other children his age and they can result in a stay in hospital. He also has to go back every three months for check-ups.

But as he rides around the family’s Tingley home Ben is like any other nine-year-old.

“He’s doing really well. His behaviour at school is causing a few problems,” added Samantha.

“He loves to ride his bike and play with his friends. The heart transplant doesn’t stop him from doing anything at all. He’d just like other boys his age.”

Ben, who attends Blackgates Primary School, Tingley, Leeds, doesn’t remember the operation which saved his life but knows that without the generosity of someone donating their organs it all could have been very different.

“On Saturday we had a bit of a party to celebrate my heart transplant and we let off a balloon as well,” said Ben.

“I don’t remember the operation but I know that I feel fine now. I really like cycling and playing with my friends. I really like ICT but don’t know what I want to do when I leave school.

Samantha added: “We are so grateful to the other family and cannot put into words how much we would like to thank them.

“We would urge anyone to join the organ donor register and also to back the campaigns to stop any children’s heart unit from closing.”

[email protected]