By Emily Parsons

Last updated at 10:31, Friday, 16 November 2012

When doctors told Shane Smith and his mum that the youngster’s heart was failing, the family’s world fell apart.

Shane Smith with mum Karen

Just 15 at the time, Shane had undergone annual check-ups on his “enlarged” heart for two years.

Weeks earlier, he had been subjected to the routine tests and mum Karen and dad Colin were reassured that while their eldest son’s heart function had worsened slightly, it was nothing to be concerned about and he was put on medication.

In one of the most dramatic deteriorations doctors at Newcastle’s Freeman Hospital had ever seen, the teenager rapidly became seriously ill and suffered a series of suspected mini-strokes.

“I was in dad’s van the first time,” Shane recalls. “I started going numb from my finger down my arm. I thought I’d trapped a nerve.

“The second time I was coaching football after school at Cockermouth. It was like looking at the sun then looking away, there were patches I just couldn’t see.”

Karen, 40, took Shane to hospital after the second episode, and they were told it was a migraine.

But Karen and Colin, 46, were so concerned they called the Freeman themselves to relay Shane’s symptoms, and were advised to bring him in a few days later for a check-up.

“I don’t know why or what told us it wasn’t a migraine, but we just knew,” Karen, from Cockermouth, explains. “We felt like paranoid parents but behind all this, in the back of my mind, was the knowledge that my brother died at the age of 24.

“His heart was enlarged and his death was blamed on a viral infection. Deep down it was frightening the life out of us.”

Thankfully, that concern may have saved Shane’s life. On Wednesday, November 11, 2009, he attended the Freeman for further tests.

“The doctor said that in the space of just a couple of weeks Shane was fit to drop,” Karen recalls.

“He said Shane would have to be admitted to the ward. He didn’t know how long Shane would be on the ward, but he felt that it was too dangerous to let him go anywhere.

“He was listed for transplant the next day. When we were in that room and the doctors said there was nothing they could do, the whole world just fell apart.

“I broke down in tears, Shane broke down in tears... you can’t describe how you feel.”

While medical staff at the hospital were “fantastic” and explained everything in a way Shane, who is now 18, could understand, he admits he has blocked out much of that time.

“I understood it, but I didn’t want to accept it,” he adds.

For the next nine weeks, the Smith family struggled to keep “normal”.

Karen spent most of her time at the Freeman, sleeping in a flat nearby every night, only travelling home every few nights to spend time with Colin, and their other son Brad, then just 13.

It was the positive attitude of nurses and doctors at the hospital which allowed the family to cling on to hope.

“They make you feel he’s going to live,” Karen explains. “But every night I went to bed and thought ‘oh God, he could die tomorrow’.

“I knew he could get through it, but there was always that doubt: what if they didn’t get a heart in time?”

The teenager was fortunate in that he was the size of a small adult and so was eligible for either a child or an adult heart.

Each day waiting was agonising, especially for Karen, who stared around at the other children in the ward, knowing many of them were also desperately waiting for a new heart.

Colin and Brad travelled to the hospital to allow them to spend Christmas as a family, and it was between Christmas and New Year that the first glimmer of hope came.

“The transplant co-ordinator came and said they had a potential heart, but needed to run tests,” Karen recalls. “But that heart was no good.

“I cried constantly the next day – I just looked at Shane and I could see how disappointed he was.”

As they struggled to overcome the devastation, less than 24 hours later they were told another heart had become available.

Sadly, that too later proved unsuitable.

Karen said: “To get all prepared and then it doesn’t happen – that was more upsetting than being told Shane needed the transplant in the first place.

“Two hearts have come along and they are no good, and you wonder if there will be a third one in time.”

Fortunately, on January 3, 2010, a third heart matched with Shane became available and, while much more complicated, this one finally went ahead.

The young man remembers little of that day, but for his parents it was far worse.

“You wait for that day to come,” his mum admits, “and then they wheel him away and there’s nothing you can do. It’s really scary.”

Shane has spoken only briefly about his transplant before, but agreed to speak in depth as part of The Cumberland News Promise Life organ donation campaign because of little Mackenzie Wealleans.

The Carlisle youngster is the face of our campaign, as he died days before his second birthday while waiting for a new heart.

The Smith family met Mackenzie and his parents, Shelley and Lee, both before and after the little boy was put on the transplant waiting list.

Karen said: “Post-transplant patients are supposed to stay in intensive care for three days. Shane’s transplant was finished by about midnight, and at about 8pm the following day the nurses said they were going to have to move him.

“Shane was the fittest person in intensive care, and so he had to swap beds with Mackenzie who had a viral infection and was very, very sick.”

While Mackenzie was not on the transplant list at that time, the family came across him again in the months that followed, as Shane returned for check-ups.

“To know somebody is in the system and it comes their time to urgently need a transplant and they don’t get one, it is horrifying,” says Karen.

Karen has not forgotten the original donor who set the process in motion.

“I would do anything for the family of the dead donor, anything,” she states simply.

Shane is currently a Gen II apprentice, training to work in the nuclear industry, and is living proof of the difference a transplant can make.

He said: “I can do everything now – except eat grapefruit because it reacts with the tablets.

“But I didn’t really eat it anyway!”

To download an organ donor register form that you can post to NHS Blood and Transplant, click here

To join the register online, visit the NHS Blood and Transplant website here

First published at 10:29, Friday, 16 November 2012
Published by http://www.cumberlandnews.co.uk