The Boy Who Gave His Heart Away Read online

  ‘Mum!’ No sound came out. ‘Mum!’

  ‘It took a long while to get through to him,’ says Linda, who was there with his father Norrie when Marc came round properly a few days after the operation, just as his great grampa had promised in the dream he would eventually remember as if it was real. For the moment, he was drifting in and out of consciousness. ‘I thought Marc was awake and I was trying to explain everything to him, but I would say something and he would go back to sleep. It took days for me to realise he didn’t know what I was talking about.’

  The nurse rolled him towards her when she was changing the bed and Linda got close up to her son’s face and kissed him and told him about what had happened. He had passed out in hospital in Scotland but that was nearly a fortnight ago and now he was in Newcastle and they were all looking after him. ‘Sweetheart, you’ve had a heart transplant.’ There was no response so she kept talking, changing the subject to say that Dad was here and Leasa and Darren and Ryan and they had a little flat around the back of the hospital so they could stay close to him. He looked at her as if he understood but then he slept and when he woke up he didn’t know what she was on about.

  ‘What flat?’

  So she told him all over again. Every morning by about eight o’clock she was at his bedside. ‘I wanted to be there. I wanted to learn everything, even how to say these drugs that I couldn’t say the name of.’

  There was a lot to learn. Marc struggled to understand what had happened. As the sedatives began to wear off he felt pain all over his body, although weirdly he said he also felt stronger. Whenever anyone mentioned the heart transplant he went very quiet, as if he was frightened to think about that. Linda wanted to know everything though, she devoured the information from the nurses. Marc’s breastbone had been broken open then bound together with wire, which would be there for the rest of his life. Tubes in his chest would stay for a few days to drain away fluid that could otherwise fill up his lungs and cause him to drown and he was still being fed through the nose. There were other tubes into his body that Linda didn’t understand at all.

  Now she was told her son would need to take drugs to suppress his own immune system. This had tried to save his life by fighting the virus when it first attacked him but now it wanted to repel another invader: his new heart. If that should happen, he might complain of chills or a fever, palpitations in his chest or extreme fatigue. The doctors didn’t say how on earth he was supposed to identify any of that when he was already under heavy sedation and in all kinds of discomfort, but they did say that the immunosuppressant drugs that were his defence against the body rejecting the heart also came with nasty side effects.

  Cyclosporine could make him sick, give him the runs or the shakes or send his blood pressure zooming up. Prednisolone could make his skin thin and crack, weaken his bones and fatten his face. Others might lead to muscle cramps or really sore joints. All of them could harm him but they were also going to keep him alive.

  ‘This lovely nurse sat with me and tried to tell me how to pronounce the drugs but she was doing it all in a Geordie accent, I just couldn’t get it.’

  Broad Scots met broad Geordie in a clash of vowels.

  ‘Sy … clo … spor … un …’

  ‘Say that again?’

  The nurses suggested she keep a record of which medicine was taken when, because there was so much to remember. The first batch of drugs could weaken his bones and push up his blood pressure, so he had to take more drugs to resist both of those. Then there were even more drugs to stop his body retaining water, reduce the risk of blood clots and fight infection. They would check his progress by carrying out a heart biopsy, which meant threading a tiny grab through a vein in his neck and into the heart to snick out a sample of the tissue there. That would show warning signs if the heart was being rejected.

  Thankfully, there were none.

  A professor who came to see Linda said: ‘What happened to Marc was one in forty million. I’ve never seen anyone survive who was so ill, attached to so many machines with every organ failing. It’s a miracle he is here.’

  When he was awake, struggling with the pain and discomfort and his fear of what was going on, Marc suddenly had a really vicious temper on him that Linda had never seen before. He shouted at his mum, swearing at the top of his voice when she didn’t act fast enough to press the buzzer to tell the nurse he was having another attack of diarrhoea, a side effect of the drugs. ‘Just get out of my face!’

  Linda ran off to the kitchen, where the nurse came and found her. ‘Are you okay?’

  ‘He’s shouting at me, swearing. I don’t get it. He doesn’t do that, my Marc.’

  ‘Listen – that’s a good thing, Linda. He’s not taking this lying down. He’s angry and he wants to fight back. It’s hard for you, but it’s a great sign. Think of it like that, yeah?’

  Linda was glad she was there. Grateful, too, that Marc had been unconscious and missed so much of the drama. She fought her own instincts and tried not to tell him too much more about what had happened while he was unconscious, in case he got confused or distressed. ‘Marc never went through all the grief that we did. He never actually saw what was going on.’ The downside of that was he struggled to understand how much his life was going to have to change. ‘He was a young boy, he was a teenager, and now we were all saying, “Right, Marc, you’ve been a big healthy, fit boy but now you’ve got someone else’s heart and you’ve got to take all these drugs for the rest of your life.” It was a hell of a lot to take in.’

  Twenty-One

  Martin

  There would be no Christmas tree in the Burton home that year. Normally Nigel put it up in the lounge and hung out the lights for Sue and Martin to decorate the tree, but Martin wasn’t there and the festive season was a hard reminder of his absence, coming only a few months after the funeral. ‘You always think your son is going to grow up, fall in love and get married. Hopefully, they’ll give you grandchildren. They’ll bring the kids round and you’ll have a nice, happy family Christmas all together,’ says Nigel. ‘There was a shock realisation at that time, all over again. You’ve lost all that, it’s gone. He’s never going to get married, he’s never going to come round with the grandchildren. It’s not just your loss, you feel sorry for him that he’s never going to have all that now.’

  Christopher was not interested in hanging shiny baubles, he was grieving in his own fierce way, says Sue. ‘When we committed the ashes in the Garden of Remembrance he was saying, “How many times are we going to say goodbye?” I understand that. I think you never completely feel like you’ve said goodbye. I still don’t now.’ It would be many years before the Burtons put up a tree again, and that was for their first grandchild. Back then, nobody felt like celebrating that first Christmas. Martin’s room was still as he had left it. ‘He had these disgusting trousers that he wore all the time. The bottoms were all ragged. They were on the washing line, on the whirligig outside when we got home. I ripped them off the line and threw them in the bin. That’s the anger of early grief. I could have quite happily gone into Martin’s room, ripped everything down that reminded me of him, and got rid of it. Thankfully, I didn’t. There was going to be a time I would treasure those things. I did the opposite, which was to just shut the door on it all. I couldn’t deal with it.’

  She had managed to go back to work, with the support of her boss at the small partnership of solicitors, who told her: ‘Come back at your own pace. If you get up one morning and you can’t face it, don’t come in. If you get here and you’re struggling, go home.’ Sue knew that she had to do this. ‘I needed some sort of structure in my life. That’s just me. I also knew that if I didn’t go back then I might never do it. I could still say it hurts too much. Every day of my life. So even if I had waited six months, I would still have had to face them all eventually.’

  On her way to the office one day she saw a boy up ahead on a bicycle in the uniform of Martin’s school. From behind, he looked just like h
er son. For a moment – a terrible, ripping raw moment – she thought it was him.

  ‘It was ridiculous. I knew it couldn’t be. But for a second, that boy was Martin.’

  Sue cried all the way to work and cried some more when she got there. There were other triggers for her feelings too. It might be a case she was working on or something that somebody said in the office that set her off.

  ‘I’d just put down my pen and go. Get out.’

  Half an hour later, she’d come back to her concerned colleagues.

  ‘You all right? Do you want a cup of tea?’

  They learned to let her cry, or sit quietly, and in a while she would recover. ‘If I want to go home, I’ll tell you,’ she said. But mostly she stayed. It was good to work, even if going on with normal life sometimes felt like a betrayal. ‘The bills keep coming, so you have to work. The family needs feeding, so you have to go to the shops. You buy some bread and milk and you put the bins out. All those things you don’t want to do, because they are too normal. By doing something normal, you are accepting what has happened. This is the new normal. You don’t want to accept that, you really don’t. But the bins still need putting out.’

  Sue got caught out again when she was shopping in Asda. The supermarket tannoy started playing ‘The Tide is High’ by Atomic Kitten, the tune from Martin’s funeral. She froze at first, then ran.

  ‘I had a trolley full of shopping but I just left it and got out of there as fast as I could. That song still stops me in my tracks, even now.’

  At least Sue and Nigel had each other. They were strong together, having been partners for a long time. They had both grown up in the same village outside Lincoln and been part of a gang of friends who went to school on the same bus every day, until he left to join the Royal Air Force at seventeen.

  ‘I was stationed at a base nearby and I needed someone to go to a dance with me and I didn’t have a girlfriend at the time, so I asked Sue. I didn’t have to take a girl, but it helps if you want to dance,’ he says, drily. ‘That’s how it started and we went from there.’

  Sue was only sixteen when they danced, but she knew what she wanted and it was him. They got engaged as soon as she turned eighteen and were married in 1980. She quickly discovered the reality of being an RAF wife, which was that her husband would be away for long spells abroad. Even when he was stationed in this country, he would often have to be away during the week and only come home at weekends. ‘It’s not an easy life. We spent more of our marriage years apart than we did together. That’s probably why we’re still together …’

  Christopher was born in 1983, after a terrible labour. Sue forgot it well enough to have another go four years later and this time the baby was born so quickly he was blue. She wondered about that when she was casting back for reasons for his death. She thought about the measles he suffered as a baby and the drugs she had taken to stave off nasty sickness all through the pregnancy. She even thought about the time Martin fell off his skateboard at the age of eight and bumped his head. All these things would churn inside her in her grief, but they were a happy family when the boys were young, even though Nigel was away a lot.

  He was sent to Belize to look after Puma helicopters at an army training camp when Martin was only eight months old. ‘You have to remember, there were no mobiles and no FaceTime. It was a phone call once a week from a phone box and that was it.’ Sue learned to keep her feelings to herself during those calls. ‘The last thing he needed was me whinging down the phone, saying, “I can’t cope without you, when are you coming home?” As a Forces wife, you can’t be like that. You have to cope.’

  Nigel also developed the ability to just get on with things. ‘You have to switch off from that and work. You can’t worry about what is going on at home. If you stew on it too much it will wreck you.’

  Holidays became very important, but they were all on holiday together at a caravan park in Scarborough when Saddam Hussein invaded Kuwait in 1990 and Nigel had to go. He was called out to the Middle East for the first Gulf War, to look after Tornado fighter bombers. ‘Nobody joins the air force because they want to fight a war. My father was in the RAF as a radar technician and I joined because I wanted to work on aircraft, it was as simple as that. I accepted that if military force was needed by our country I was going to have to be part of that. You have to deal with it the best way you can.’

  Sue was left with the boys, who got on well. ‘They were far enough apart in age that they didn’t want to steal each other’s toys. Christopher was very laid-back and just accepted everything Martin did. Martin was like me, extremely short-tempered, but Christopher could handle him and they had a lot of laughs together. Martin would get back from school earlier because he was that bit younger and he’d always want his big brother so you’d hear Chris shouting: “Get out of my room!” After we lost Martin, he said that was one of the things he missed. His little brother in his doorway, yacking away. The things that have driven you mad are often the things you miss the most.’

  Twenty-Two

  Marc

  Marc felt like he had been smashed to pieces and glued back together the wrong way, but there was no escape from the physiotherapist. She came to see him every day, at first encouraging Marc to sit up a little, then a few days later to sit up properly and after a week or so even to dare to put his feet on the floor and try to stand. He felt sick and dizzy immediately and had to lie back down, head thumping. But the next day she came again, and challenged him to try again. He felt sick again, but not as much as before. And the day after that, when she brought a friend to help her help him, Marc stood up properly for the first time. The strong legs that had made him such a great football player were now weak and he was thin, laughably thin, having lost three stone since he fell ill.

  ‘You’re like a cowboy,’ said his mum, trying to cheer him up.

  ‘What you on about?’

  ‘Look at you!’

  It was true. As Marc began to take his first steps, then walk as far as the end of the bed, then to the door of the room, it became obvious he was lopsided now. The stroke had given him a curious swagger, like a sheriff walking down Main Street at High Noon. But he was a cowboy with no hope of jumping on a horse any time soon, who had to carry a little box with him when he walked. It looked like a silver PlayStation but the wires coming out of it went under his shirt and under his skin, right into his heart. The electrical pulse sent from inside the box kept his heart rate constant.

  ‘What’s this then, a hotel?’

  Norrie was surprised when he came to see his son in the adult ward. This was late September, almost a month after Marc had first been rushed to hospital and he had passed his sixteenth birthday now, so he was no longer with the children. The rooms here were organised along a corridor and all made out in dark pine, which gave the place the feel of a Swedish lodge. His cubicle had a bed, an armchair by the window and a bedside cabinet and all was far less clinical than before, although the nurses were still in and out constantly. Lynne Holt had an office nearby and she was keeping an eye on the McCays, knowing that the days after the transplant can be difficult for everyone, as they try to understand the new normal. Families react in all sorts of ways. One man whose wife sadly died following a heart transplant asked for her old heart to be put back into her body for the burial, in place of the new one that had been rejected. ‘We still had the heart, it was in the lab. We are very careful about the way we handle organs these days. I hope it gave him some peace.’

  Then there was the mother who lost her baby child after a transplant and asked to be given the original heart to take home. ‘I was worried about that, but after talking to her I said, “Would you like to see the heart, to say goodbye?”’ She left the mother in a room with the heart, which was in a see-through plastic bag in a white pot, a bit like a beach bucket. Lynne opened the bag and rolled the edges back. ‘I don’t know what she did in there, or whether she touched the heart, but I do know that when she came out she said, “Tha
nk you.” That was enough for her.’

  The patients had to be watched closely too. Some felt revulsion towards the organ that had been put inside them, but that was rare. Others believed they were beginning to think and feel differently, taking on the thoughts and emotions of the person whose heart they had received, although they usually knew very little about them.

  This may not have been so strange, actually. Science is beginning to explore the idea that the heart doesn’t just receive signals from the brain telling it what to do, it also sometimes ignores those instructions and sometimes sends back its own messages. We seem to have something called system memory, allowing organs to store information, which would make a little sense of some of the more extraordinary accounts given by transplant patients like Claire Sylvia, a dancer and choreographer who had a heart and lung transplant in the late Eighties and said she found herself strutting like a young man, craving beer and chicken nuggets from KFC. Her donor was an eighteen-year-old man who liked these things far more than she did. Then there were the American patients interviewed for an academic study the year before Marc’s operation. A college professor reported seeing flashes of light in his face all the time, then his donor turned out to be a police officer shot in the face while trying to arrest a drug dealer. A man who received the heart of a seventeen-year-old music student and violinist found himself strangely drawn to classical music. A very macho man was given the heart of a woman and started wearing a lot of pink and putting on perfumes he had never even let his wife wear. Some of this could be put down to coincidence, said the study, but not all of it.

  An eighteen-year-old called Danielle was shown a photograph of the boy whose heart she had received after his death in a car crash. She was told he had written songs before his death including one called – incredibly – ‘Danny, My Heart is Yours’. The response recorded by the researchers was powerful. ‘I knew him directly. I would have picked him out anywhere. He’s in me. I know he is in me and he is in love with me. He was always my lover, maybe in another time somewhere. How could he know years before he died that he would die and give his heart to me? How would he know my name is Danielle? His song is in me. I feel it a lot at night and it’s like he is serenading me.’