Organ donation saves lives. Why don’t more people sign up for it?...

Organ donation saves lives. Why don’t more people sign up for it? | Cole Moreton


I used to be squeamish and not want to think about organ donation – ugh, no thanks – until I saw something truly extraordinary that changed my mind. The mother of a boy who had died reached out to touch a stranger who had been saved by him. Sue Burton put her hand on the chest of Marc McCay and felt a flutter under her palm. The beating of a heart that had been born inside her.

The heart that had given life to her son Martin for 16 years, until he was suddenly struck down by a brain haemorrhage, without warning, in the middle of the night. The heart that had been removed from his body, packed in ice and flown across the country in a race against time, to be put in the body of another 16-year-old, called Marc.

Now here he was, 13 years later, the boy grown into a man. “To be able to feel the heart that Martin was born with still beating, that’s incredible,” said Sue. Tears were shed, including mine. I was there as a reporter who would tell the story of this modern medical miracle in a Radio 4 series and now a new paperback book called The Boy Who Gave His Heart Away. But in that moment, it all became personal. Everything changed.

Before that I hadn’t wanted to know about organ donation. To be honest, I still feel sick at the thought of someone I love – or myself – being cut up and given away. That’s understandable, right? Reactions like that are part of the reason why only one-third of us sign up to be a donor, although surveys show that almost everyone thinks it’s a good idea in principle.

We marvel at stories like that of 13-year-old Jemima Layzell, whose sudden collapse was a tragedy for her family, but whose organs went to save or improve the lives of a record eight people, the most ever in the history of the NHS transplant service. But still, we don’t sign the register or carry a donor card.

NHS Organ Donor Card.

‘The NHS says that three bereaved families a week refuse to donate because they’re not sure what their loved one would have wanted.’ Photograph: BRD Associates

We avoid having the conversation with our families. Confusion ensues, if the terrible moment ever comes.

The NHS says that three bereaved families a week refuse to donate because they’re not sure what their loved one would have wanted. They feel safer saying no. Meanwhile, more than 6,000 people are waiting for transplants at any one time and some have not got long. Last year, 457 men and women, boys and girls died while they were on the list.

But frankly I didn’t know or really care about any of this until I met Sue Burton and Linda McCay, the mothers of the two boys Martin and Marc, who have formed an incredible and unlikely bond.

The people who get the organs almost never meet the families of those who gave. Thanks are usually passed on via the hospitals, anonymously, by letter or email, with a first name and age only. Anything more is extremely rare. But Linda did make contact with Sue, through a remarkable series of coincidences. One was still grieving and one was grateful, but they each felt understood by the other because of all they had been through – separately, hundreds of miles apart – when their boys suddenly fell sick in the summer of 2003.

I met Sue first and she told me how the doctor in Nottingham asked if she would consider organ donation just moments after saying that Martin was brain dead and there was no hope for him. The timing seems brutal, but she says it was a mercy. “If he had left it another half an hour or hour I would have been so consumed by grief I wouldn’t have known my own name, let alone been able to answer the question.”

Sue and her husband Nigel, an aircraft technician in the RAF who raced back from exercises in the Nevada desert to be by his son’s bedside, had already discussed organ donation. They knew what they wanted to do. That makes it so much easier to deal with a terrible moment, if and when it comes.

They actually felt some relief in the midst of overwhelming grief, that good might come of their tragedy. It helped them then and it helps them now to know Marc was saved by Martin.

And when we were talking about this, Nigel asked me about my own children: “If one of them needed a heart in order to survive, would you want them to have it?” Of course, I said. I understood why Linda had even begged the doctors to take the heart from her living body and give it to her son. I would do anything to save them.

“Then how could you deny that to another parent and their child, if yours had already gone?”

I had no answer, except to sign up as a donor. I hope you do the same.

Cole Moreton is the author of The Boy Who Gave His Heart Away, published by Harper Element

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