The Boy Who Gave His Heart Away

by Cole Moreton

  He had to be careful about talking like that to Sue and Nigel when they came to visit him in Winchester, because of course they had lost their child. The Guardian had heard about the story and offered to put the Burtons up in a hotel nearby for the night, but that meant there would be a camera present recording every moment, which made it awkward. ‘I was still carrying a bit of guilt. Sue was in a bit of shock. I felt like she was looking through me to Martin. The next day she called me on the phone and said sorry. That was okay, it was hard for her. I told her there was nothing to apologise for.’ Sue and Nigel had done him a great favour, by coming all the way down from Grantham and helping him not to feel bad about Martin’s death, by saying they were only glad something good had come out of their tragedy. ‘It made a massive difference to hear that from the parents, especially when you are a parent yourself. You sort of know that it’s not your fault, but you don’t know, deep down, as well. I’m not sure where the guilt comes from, but once I was cleared of it by that conversation, I just wanted to live.’

  Andrew and Sue did meet again in time, and it was easier. Over the years they settled into a long-distance friendship, neither asking too much of the other, although he did anything he could to promote the cause of organ donation and help patients cope. ‘I would say this to anyone who has had a transplant: don’t settle for an ordinary life. Be the best you can be at whatever you do, find joy in that and if you can’t then do something else. I will always be grateful to Nigel and Sue for releasing me from my guilt to be fully like I am now and live my life to the full.’

  Twenty-Nine

  Marc

  ‘I carried Sue’s letter around with me everywhere I went and I kept getting it out, looking at this wee boy and crying,’ says Linda, the mother of Marc. ‘For about three months I did that, until my mother said, “You’ve got to stop this, hen.” So I put the picture of Martin in my Bible. I don’t go to church religiously, I don’t read my Bible every day, but I do take what I want from it when I need to, whether that’s reading Proverbs or the Psalms or whatever, so I put the picture in there. I would talk to him. I know that sounds cuckoo but I would thank him and say, “Your mum’s brilliant.” I didn’t know anything about her but I felt I owed it to her to keep Martin’s memory alive, his heart was beating inside Marc, that’s the heart we were given.

  ‘I asked Martin for help, too. I’d say, “If you’re up there, please ask God to look after my Marc, don’t let Him take my son away from me after everything we have been through. You gave us this gift, Martin, I think it’s your job to look after Marc.”

  ‘Some people think I’m mad, but it helps me to think about it like that. I did think of Sue all the time, as another mother like me, and I thought, “I would dearly like to meet you one day.” I tried to find her many times over the years, on the Internet, but they didn’t even give me her surname. I was pretty sure it was not ever going to happen, but I never gave up hope.’

  Marc just wanted a normal life. If he was never going to be able to play football again then why couldn’t he be like any other teenager and go out with the gang or stay up late for a poker game, drink whatever the hell he wanted and shake off the hangover in the morning? What was to stop him? His sister Leasa was torn between warning him not to put himself in danger and cheering his fight for the right to party. ‘The doctors told us that as long as he took his pills at the right time, the only thing that was going to change in Marc’s life was that he had to protect himself from the sun. He didn’t need to have a restricted life. But he didn’t need to kick the arse out of it, get mega drunk and sleep all the next day. He beat himself up over that later, but there is no way he should have blamed himself. It was a lot to put on a boy of sixteen.’

  Football saved him. Out of the blue, as he got stronger, a cardiologist overturned the previous advice and told him to exercise as much as possible, to get the heart beating. So Marc stepped up the pace on the treadmill at the gym. He went to the local pool in Lochwinnoch and got fitter and fitter over the months, surprising himself. His confidence began to come back. He kicked a ball in the park and found that he hadn’t lost his touch, although his chest would burn and his legs were quickly exhausted. Ultimately, he would play five-a-side with his brothers at the sports centre and then even join the village team for full games, although the coach was cautious.

  ‘Marc, I’m not sure about this. We can’t have you running about the park for ninety minutes. Maybe come on as a sub.’

  ‘Aye, right,’ said Marc, frustrated. ‘I’ll do that. For now …’

  Thirty

  Martin

  Real men don’t cry. That’s what they say, but it’s rubbish. Nobody knows that better than Nigel Burton, who was trained in the armed services to keep his emotions in check, but found when he lost his son that it did him no good at all. ‘Everybody expects the man to be strong, not to show emotion. The mum carries the child, gives birth to the child, there is always a very strong emotional psychological bond between a mother and a child and you have to accept that as a father, but society generally says the man should be the pillar of society, with a stiff upper lip. That is totally wrong. A lot of the men I have met who have lost their sons or their daughters say the same. Show your emotion. Do cry. Don’t be afraid. You’re just human and if you bottle it all up you will eventually break.’

  Still, he was content to let Sue take the lead when it came to talking about their story in public, as she increasingly wanted to do as a way of dealing with the grief, to encourage others to sign up as donors. ‘They always want to know about the mum anyway, the attention is all on the mother and not the dad. I’m happy with that. I understand.’

  Sue was ready to tell her story to anyone who would listen, if it would help the cause. She was still very nervous when they asked her to appear on a television show called The Big Questions in February 2012. Sue would be sitting in the front row of a semi-circle as part of a panel talking about organ donation, with audience members behind her. Facing her was none other than Professor Richard Dawkins, the most outspoken scientist in the country, a champion of atheism with a habit of swatting away all those who disagreed with him. That was okay, though, she wasn’t there to argue with him about God. She was going to tell the people in the room – and the couple of million people watching at home on a Sunday morning, although she didn’t want to think about them – the story of Martin’s death and donation and what it made her believe about the big question at hand, which was this: ‘Should it be easier to harvest organs for transplant?’

  Sue didn’t like that word – ‘harvest’. Nor did a couple of the doctors on the panel either, it turned out as they chatted before the show in the staffroom of the school where the debate was being held. There was coffee and pastries and apples and bananas in a bowl with oranges too, although she wondered who on earth was going to eat one of those messy things before going on live television. Sue had chosen a black and white print dress and a matching gold necklace and earrings. She had been to have her hair done for this, as a way of finding the confidence.

  The host, Nicky Campbell, was tall and formidable in a black suit and an open-necked white shirt and he was circulating the room, giving everybody a few minutes before the show. Sue thought he was trying to get the measure of them all. A researcher said it was time to go through, so she took a last swig of water, breathed deeply and followed. She was amused to see that beyond the pool of studio lighting and the stage dressing it was just a big old draughty school hall.

  ‘Don’t look at the monitors while we’re on air, or you’ll look daft,’ the presenter told them all as a technician attached a microphone to her collar. An imam was sitting next to her, jammed up against her shoulder, and he gave her a nice smile. Professor Dawkins was smiling to himself as the presenter launched into his introduction and Sue felt a surge of nerves. ‘Doctors are now asking whether donors can be kept on ventilation to preserve their organs for longer,’ said Nicky Campbell and she thought about the long ni
ght and day that Martin had been lying there, pink and warm but dead already, waiting for his dad to come and say goodbye and for the surgical teams to be ready. She was grateful for the extra time with him, but to have gone on for another day would have been torture.

  ‘He’s a hero for what he’s done for others,’ said the presenter, now talking about Martin and looking straight down at her. People applauded. This was her cue. Her mouth was dry and her voice was shaky but she did manage to get the words out: ‘You’ve got a very short space of time to make a decision you will have to live with for the rest of your life. Whether you agree to it or not, whether you say yes or no, it is important not to regret that.’

  The doctors had been sensitive and supportive and made it feel like a positive decision, she said, but it was still awful to have to think about organ donation when you had just been told your son was brain dead. There should be a campaign to make people more informed in advance. ‘People need to talk about it around the dinner table when there is no emergency, before they are sat in ICU with a member of their family who is dying.’

  Everyone clapped again, including Professor Dawkins, who declared: ‘Well said indeed. These are very, very difficult matters.’ The grey-haired scientist pulled out a donor card and waved it in the air. ‘The doctors’ and the patients’ lives would be made a lot easier if everybody carried one of these!’ That was very popular and drew more applause, as he had known it would. Then the presenter moved along to an intensive care consultant that Sue had met before, who talked about how collecting the organs and delivering them to the patients straight away was one of the most complicated processes performed anywhere in the National Health Service. ‘It takes anything up to twenty-four hours to organise multiple surgical teams from around the country to come to the hospital, while recipients are getting phone calls telling them to go to their hospitals now. The family of a dying person is there the whole time. Twenty-four hours is an eternity for those people.’

  The next speaker was a young woman called Amy, who was waiting for a double lung transplant. There was a plastic tube in her nose to help her breathe and she looked very pale, but Amy was forceful. Four out of ten potential donors had their will denied by their families, she said, because the living didn’t respect the wishes of the dead or just couldn’t go through with it. Amy wanted a new system that assumed everyone was willing to give up their organs unless they opted out. She said she felt bad waiting for someone to die, but Sue wasn’t having that.

  ‘You’re not waiting for someone to die, Amy,’ she said urgently, leaning forward, trying to look her in the eye. ‘You’re waiting for someone who is going to die anyway, and for their family to say “yes”.’

  Her heart was beating fast now, but the discussion moved on. The imam next to her was waving his hands in her space, saying he would never carry a donor card.

  ‘There should be a card that says “Don’t take my organs after my death!”’

  Sue bristled at that, what was he on about?

  ‘Not every Muslim knows that in the holy book, the Qur’an, it says that my hand, my feet, my ear, my vision, my skin will record every deed I do in this life, good or bad. On the Day of Judgement, my account will be put by my organs.’

  She had never heard that before, but now another Muslim was contradicting him. He was younger, with kind eyes, and he had a different reading of the Qur’an. ‘That’s too simplistic. The organs don’t have to be near you to testify. God needs to see your spiritual heart, not your actual heart. As a Muslim, I believe I have been put here to do good.’

  He would donate his organs and he would certainly want them to be available if he or his family fell ill. There was a Christian too, who agreed. ‘I see human beings as gifts to each other and that’s why we are here. We exist in a community, we have obligations to each other.’ A sweaty guy on the end of the row, dressed all in black, was there for a different debate on the same show but was trying to say he had been persuaded to think about carrying a donor card. He stumbled over his words and they ran out of time.

  Sue was relieved it was all over, although she was concerned that she had not done very well and she said so to the guy in black as they were led back to the green room to pick up their stuff, before taxis took them home. He tried to be reassuring – I know that because he was me. This is where I step into the story I have been telling up until now, as this was the day I met Sue and began to hear about Martin.

  I had always been squeamish about the idea of anything – heart, lungs, liver, kidneys or corneas, whatever – being taken from my body after death. It stirred up feelings I didn’t understand, but nobody had ever forced me to confront them. Listening to Sue, I was challenged to start thinking it all through rather than avoiding the issue, and she asked a question of her own that cut right through the core of it all.

  ‘If your child was dying and the only thing that could save them was an organ from someone else, would you want them to have it?’

  ‘Yes, of course,’ I said, being honest.

  ‘Then how can you deny that to someone else after you’ve gone?’

  My personal feelings about organ donation began to change at that moment. And although neither of us knew it at the time, Sue’s appearance on television that morning was about to change her own life too, dramatically.

  Thirty-One

  Linda

  ‘What the hell?’ Linda woke up on the Sunday morning to the sound of her mobile ringing on the bedside table and when she groped for the phone and found it she saw ten missed calls from her mum. Something must be wrong. Everyone in the house was asleep, so she kept her voice down – and it was always croaky enough anyway first thing in the morning – when she called back.

  ‘Mum, what is it?’

  ‘Linda, I am deadly serious, hen. I think I have just seen Marc’s donor’s mum on the television. I am not joking, something drew me to this woman.’

  ‘What do you mean?’

  ‘I’ve just got this feeling. You better switch it on, hen, right now.’

  So Linda turned on the television and saw Sue on The Big Questions talking about Martin. The caption under her name mentioned the Donor Family Network charity, which got Linda thinking: ‘Right, there’s my lead. I’ll find them and I can find her.’ And she did.

  Nigel was actually the first to get a message. ‘I had a friend request from a Linda McCay on Facebook, but then I get quite a few because of the charity. Sue was not on Facebook at that time. I didn’t really appreciate who the person was but I accepted it and thought, “Whatever”. Then she posted something. I read the post and the penny dropped. I thought, “I know who you are. You’re Marc’s mum.”’

  The post was actually a link to an article I had written about Sue and Andrew, who had got Martin’s liver. Sue was a bit shocked to see it there. ‘I looked on Linda’s Facebook timeline and the first thing I saw was a picture of Martin. She had used the picture from the article and said, “Follow this link to read the story of Marc’s donor.” It was scary. You know these things are out there in the public domain but it is quite alarming when you go onto someone else’s timeline and see the face of your child.’

  The two mothers began to email each other, sending long messages about their families and giving their own accounts of what happened in August 2003. They compared dates and had a lot to talk about, although having been so keen to get in touch, Linda now found herself holding back, emotionally.

  ‘For a long time I felt guilty, and when we started corresponding I didn’t tell her how I felt. I had lived for years with that guilt, because the year to the day after Martin had collapsed – as I now knew – my first grandson had been born. Leasa’s son Robert was like a gift from God to me, but I felt, “How can I tell that woman who has lost her son that I have still got my four sons and now I have got a grandson as well?” I was still crying for her and I was not very good at holding it together. So I had to be careful what I said to her, I didn’t want to cause her any more pai
n.’

  The feelings were raw. They were three hundred miles apart and the moment never seemed right so the Burtons and the McCays did not meet … until Lynne Holt intervened, unexpectedly. This busy, bustling organiser who led a nursing team at the Freeman also worked with a charity called Transplant Sport and she had an offer to make. A company in Canada called the Rocky Mountaineer was inviting the families of donors and those who had received organs to ride together on what it called a Train for Heroes. They would be flown out to Canada and given hotel rooms, great food and drink and a two-day ride on a luxurious train with a glass roof so that everything was on view as they passed through some of the most spectacular scenery on earth, from Vancouver to a place called Lake Louise, deep in the Rockies. This would help raise awareness of Transplant Sport and just be a great thing to do. On top of that, if the Burtons agreed to go then the company would make the same offer to the McCays. ‘I had never been involved with a situation like this before,’ says Lynne Holt. ‘As a mother myself, I felt for Sue and for Linda. I was emotionally involved with this now. The donor families say they are not brave, because they made the only decision they could make and it comforts them knowing that good comes out of their loss, but they are brave really. So it was wonderful to be able to say thank you and to give them the experience of a lifetime.’