The Journal launches NHS organ donor campaign

Sep 26 2009 by Hannah Davies, The Journal

Today The Journal launches a campaign to get people to sign up to the NHS organ donor list.

Click here to register as an NHS organ donor online or telephone (0300) 123 23 23

As The Journal encourages people to sign up to the National Organ Donor register, Hannah Davies speaks to a 13-year-old boy about his transplant... from his mum.

DANIEL Newlove has a cheeky smile and a restless energy. Just like any other 13-year-old boy would be, he’s fidgeting in his seat and probably wishing he was out playing with his mates rather than talking to me.

Instead he’s fending off questions about his transplant, saying: “I don’t remember it really,” and asked if he’s worried about the future: “Not really, I don’t think about it”.

One thing Daniel, a pupil at Wellfield Community School in Wingate, County Durham, does know though is he has much more energy now than he did before.

“I was too tired to play as much as everyone else,” he says, “it’s much better now”.

For Daniel’s parents, Margaret, a hotel receptionist at Hardwick Hall Manor, near Hartlepool, and Mark, who is currently unemployed, the memories are much clearer and more painful.

When Daniel, who has an elder sister Jennifer, 16, was born at the University Hospital of Hartlepool they knew something was wrong with his internal organs, a scan had shown that.

But they didn’t know what the exact nature of his problem was.

Straight after birth, hours of examinations were carried out and it was discovered Daniel had dysphasic kidneys.

“We spent the next eight hours with him having a different tests,” Margaret recalls.

The doctors told Margaret and Mark that at some point Daniel would need a kidney transplant, it was just a question of when.

But just 10 days after he was born, the tiny boy was put on dialysis.

“I knew something was wrong,” Margaret recalls, “he wasn’t putting on weight like he should do”.

Daniel was rushed to Newcastle’s Royal Victoria Infirmary where he was immediately put on dialysis.

“They told us to drive him in our car because it would be quicker than taking an ambulance,” Margaret says.

“It was touch and go for a while, but he made a good recovery.”

Although Daniel was taken off dialysis his condition was monitored closely by doctors at the RVI and he was placed on long-term medication.

Margaret says: “The doctors thought he would need a transplant by the time he was 18 months old, but we managed to get him though until he was 10.”

Every three weeks Daniel had to be taken out of school and go to the RVI for monitoring.

But what had the biggest impact on his day-to-day life was his lack of energy.

Margaret says this was obvious even from nursery school age.

She adds: “Just in normal nursery games he didn’t have the energy of the other people.

“When he got older he’d play football, but not as often as the other children.

Mark adds: “And when he did play he’d always be a goalie to try and save energy.”

“And now I’m a striker,” Daniel grins.

As well as his lack of energy, Daniel had to be extremely careful with what he ate, as any foods which had too much protein, potassium, phosphate or calcium, could severely damage his liver.

He wasn’t allowed around to his friends’ houses for years in case they gave him something that would make him ill, and there was no chance the family could go out for a meal together.

Margaret adds: “I’d make him renal chips, which you part-boiled first to break them down, because he couldn’t eat normal ones, even then I had to limit how much I gave him.

“We couldn’t got on holiday either as we had to be near a hospital with good facilities in case something went wrong.”

Despite the conditions of the diet Daniel had to follow and his lack of energy, doctors were pleased with how he had been progressing.

But, at age 10, the inevitable happened.

“We were at hospital every three to four weeks,” Margaret says.

“The tests were showing that Daniel’s kidneys were entering into their end stage, so we needed to take action.”

In cases such as Daniel’s living donors are always a preferable option.

He was placed on the transplant waiting list while tests were carried out on his parents to see if they would be suitable donors.

Margaret explains: “You have to go through a whole barrage of tests if you want to be a living donor. It’s certainly not as simple as just giving your kidney.”

It was during the course of these tests the family got another surprise.

“It turned out Mark only had one kidney,” Margaret says, “which is actually quite common, so it was down to me to be the donor.”

After completing the tests, including a counselling stint that is compulsory for all living donors, Margaret was given the go-ahead to donate her kidney to Daniel and a date was set for the operation on January 11, 2007.

Margaret says: “Obviously you have reservations at first, but long-term you just don’t think about it because when you have a child with kidney problems it doesn’t just affect him, it affects the whole family.

“There was never any doubt that I’d have the operation if all the tests were passed.”

Margaret’s operation took place in Newcastle’s Freeman Hospital and Daniel’s at the RVI.

Mark says: “The day of the transplant was probably the worst day of my life.