One life for another

She heard a bang from her son’s room. The sound was the first indication that Sue Burton was about to have to make a decision that no parent expects to have to make. A few minutes later, Martin staggered into her room. She describes him looking through her with a glazed expression before he collapsed on to the floor.

“He had been a completely healthy teenager, no illness,” says Sue. “I thought maybe he’d just fallen out of bed. I never imagined it was anything serious but he went into a type of coma.”

She rang an ambulance and her 16-year-old son was rushed to hospital. It was there Sue found out that Martin had a bleed in his brain.

Surgeons operated, but were unable to stop the bleeding. “Sadly, we were told the bleed had been too extensive and there was nothing they could do,” she says, her voice trembling slightly. “We had considered organ donation for ourselves, but you don’t think about your children dying. But I had no hesitation in agreeing knowing that Martin was healthy, his organs were healthy...he was, sadly for us, an absolute perfect candidate for organ donation.”

More patients need organs

Martin was put on life support for 36 hours to preserve his organs while his father, Nigel Burton, returned home from his job in the United States. “Martin did donate his heart, his lungs, liver, kidneys and his corneas the next day,” says Sue, trailing off into silence.

Martin’s organs were among those that made it possible to save the lives, or at least improve the lives, of 2,854 patients between April 1, 2003 and March 31, 2004 in the United Kingdom.

Since then, the number of lives that were saved or improved has increased annually, with 2012 to 2013 seeing 4,212 transplantations taking place. But with 7,332 patients recorded as still needing organs, it is far from enough.

There is a similar issue in Germany, where Alex is one of 11,000 people waiting for a new organ. The 20-year-old from the Life Links episode #stillbreathing needs a new heart. But instead of seeing an increase in the numbers donating their organs, like in the UK, in Germany less people are choosing to become donors.

Between 2012 and 2014, the number of transplantations that took place fell from 929 to 780.

Fear and mistrust

An organ scandal, which saw doctors accused of falsifying information to enable some on the transplant list to receive organs quicker than they would have otherwise, has had negative effects on organ donation.

It is this fear among others that is part of the reason that people are choosing not to donate their organs in Europe’s biggest economy, says Monika Hünert, of the Bundeszentrale für gesundheitliche Aufklärung (BZgA), which conducts studies on organ donation in Germany.

“Many people - around 60 percent - say they fear abuse through organ trafficking,” she says. “53 percent of people worry that their organs will not be fairly allocated and given to someone who needs it most. Another worry people have is that a doctor would not make all efforts to save someone if they have an organ donation card.”

It’s not just in Germany where people fear and mistrust is preventing people from donating their potentially life-saving organs. Despite around 90 percent of people in the UK saying they support organ donation, fewer that one third are registered, while an average of three people die per day waiting - approximately the same number as in Germany.

Supporting families of organ donors

Still, there are movements trying to change peoples’ perceptions of organ donation. Following Martin’s death in August of 2003, Sue wanted to meet other parents who had lost their children and decided to donate their organs. So she and her husband, Nigel, joined an organization dedicated to help those who had had similar experiences. As well as supporting families of organ donors, the Donor Family Network also raises awareness about donation and encourages people to sign up to the donor register.

“After we lost Martin, I knew I needed to have contact with people in a similar position,” says Sue calmly. It’s been more than a decade since Martin died and since then she has been interviewed multiple times and spoken about her family’s experiences to raise awareness. “We’ve been actively involved and able to offer support to newly bereaved donor families. It’s so satisfying to be able to offer that to families who want support from people who know what they are going through,” she adds.

Joining the organization has even enabled Sue to meet some of the recipients of Martin’s organs. A few years ago, she says she met the person who received Martin’s liver - a hairdresser called Andrew Seery - and in September, she met the heart recipient.

“It was incredibly emotional. We spent a couple of days together and there were a lot of tears shed on both sides,” says Sue. “It was an honour as well to meet - he’s such a nice man and for us to see the benefit of the decision we made because a lot of families never get that opportunity. They make the decision, but they never then know what’s happened after than, so it’s been quite special for us and for them to build a friendship.”

Keeping Martin’s memory alive

Despite it being more than a decade since Martin died, his family have strong recollections about a teenager Sue called “a real boy”. They regularly meet with teachers who regale them of stories of Martin’s school-time exploits while an award is presented in his name to students, who have offered help and support to their peers.

“He was noisy, talkative, he was just a normal teenager. We have so many times that we laugh about Martin - there are a lot of things where we think: ‘Do you remember when...’,” says Sue, speaking as if on the verge of laughter. “But he was a real caring sort of person and a loving sort of child. He wanted to be a nurse.”

Although there was no time to consider it at the time, for Sue, making the choice to donate Martin’s organs has turned into another way of keeping his memory alive.

“We knew there was nothing that could save Martin...whatever decision we had made that night, we would have been bereaved parents,” she says, her voice strong and full of conviction. “But by making the decision we did, we know that we saved the lives of two other people. It doesn’t make up for losing your child, but something good came out of our tragedy.”