The Boy Who Gave His Heart Away Read online

  Most people catch a cold or a sore throat from the same virus but after a few days the body fights it off and the bad feeling passes. This time the cells of the virus travelled through the bloodstream all the way to the meaty muscle of Marc’s heart. This is the myocardium and a bad attack by a virus leaves it thin and inflamed, a rare condition known as acute viral myocarditis. We don’t pay that meaty muscle much attention, but it is the practical reason we go on living, the engine room of our ship, the physical source of the power that keeps our lights on. Ba-boom, ba-boom, ba-boom. That’s the rhythm of life, the sound of the engine working, pumping blood into the lungs to pick up the oxygen we need to survive, then pumping it on again to feed the rest of the body.

  When the engine fails, we know it. The lights go out.

  Marc’s heart was ill and swollen and could beat only weakly so the blood was not getting around his body properly. His organs were being starved of the oxygen they needed and they were failing – his liver was drying up, his lungs filling with blood. Marc was fading fast.

  His family took turns to stand by his bedside, watching over him. Leasa, his sister, who was just nineteen and studying to be a nurse, had read that if you cry in front of people who are unconscious they might hear you and get scared, but if you tell them stories or sing it might stimulate their brain. So she sang to him. The song that came to mind was called Pretty Green Eyes by Ultrabeat and it usually had a massive club sound; but as she sat there by his bedside in the quiet murmur of the hospital, singing into his ear, her pure, clear voice made it sound like a song as old as the hills.

  Pretty green eyes,

  So full of wonder and despair,

  It’s all right to cry, for I’ll be there to wipe your tears …

  You’ll never have to be alone.

  Blood is pumped away from the heart to the rest of the body through the arteries and one of them runs deep through the groin and the leg. For the doctors, it offers a way into places that are otherwise untouchable without surgery. They injected Marc with a long needle and pushed an impossibly thin, flexible pipe through the needle, into the artery and all the way up his body against the flow of blood, into his chest. Gas was used to inflate and deflate a six-inch-long balloon on the end of the pipe so that it rose and fell inside the aorta – the main artery of the body – with a natural rhythm to match that of the heart, allowing the inflamed and weary muscle to rest and recover its strength. Amazing … but it wasn’t enough.

  Marc’s heart was too damaged and weak for the balloon to help much, so they tried a more advanced piece of kit that was new to the Royal Infirmary: a device that sucked blood out of the body, gave it oxygen and pumped it back in – a bedside mechanical stand-in for the heart and lungs. This was cutting-edge technology that made the television news that evening: ‘For the first time ever in Scotland, a mechanical assist has been used to keep a patient’s heart going.’ And it was a fantastic success at first. The monitors that had been so quiet as Marc lay there, barely functioning, now bleeped and flashed as his body found new strength.

  Norrie, Marc’s father, who was a roofer in his forties at the time, remembers what he said when he saw the screens behind Marc come to life: ‘Wow, this is us sorted. It’s like the Blackpool Illuminations in here!’

  Linda was in the room with him and she was just as thrilled. She grabbed hold of her ex-husband and laughed, but the joy didn’t last. The movement on the monitors slowed again and then stopped, and within half an hour they were as quiet as before. Marc was sinking again. And the high was followed by a new low. Linda saw something else now, something that horrified her. She noticed that the colour had begun to drain from Marc’s legs, leaving them grey with white and red blotches. The death tartan. She recognised that from seeing patients die on her ward.

  ‘That’s it, he’s going now,’ she thought, getting angry. ‘This is not the way the world is meant to work. They are not supposed to go before us!’

  So says every parent who has had to watch a child die. Stunned and confused, she and Norrie went back to the family room, where their sons and daughter and Linda’s mother did not know what to say. Then the doctor entered the room too and the sky fell in.

  ‘Marc is dying right now, as we speak, and there is nothing else we can do.’

  Linda heard a fierce sound like a riot in the street outside, but it was right beside her: Betty, her ‘wee, sensible mother’, going frantic. Linda heard her cries through the double glazing of panic and fear. Norrie was angry too, but their daughter Leasa tried to hold it all together for all of them. The eldest and quietest child was also the strongest, and now as the doctor talked again about a virus and tried to explain myocarditis she interrupted him and the words came spilling out of her. ‘What does that mean? He’s fit, he’s healthy, he doesn’t drink and he doesn’t smoke. We’ve got no history of heart problems in the family. What are you talking about?’

  She thought of her brother, wrapped in silver foil to keep the heat in as warm air was fanned over his body, and Leasa felt as if the doctors had already made their decision and all this medical jargon was a way to justify letting him go. ‘It was like they were giving him his last rites.’

  Linda lost control then and in her wild panic she fixed on a consultant cardiologist who had come to help explain, a small man she thought looked Italian. Grabbing his lapels, she yelled into his face. ‘You’ve got to do something. He’s only fifteen!’ The doctor was sorry, he said. He told them that he would do anything he could to save Marc, she had to believe that, but that they had run out of options.

  ‘There is nothing more we can do.’

  What do you say when your friend is dying? How do you go up to a mate in a coma, all wrapped up in blankets, unconscious with a tube down his throat and all those wires connecting his body to machines, in front of his parents and his granny and his sister, and say, ‘Yeah, so … Right. Goodbye then, pal.’ The two lads who came to visit Marc were brave and resourceful but they couldn’t help the tears. Linda held them both, one on either side of her, pushing their heads hard against her shoulders as if trying to squeeze the pain away, for all three of them. It didn’t work.

  Norrie was in the corner of the room, answering strange questions from the dishevelled but commanding doctor: ‘What height is Marc? What weight do you think he is?’

  Linda overheard and turned on the medic, furiously. ‘What are you asking that for? You wanna be measuring him for the morgue, is that it?’

  ‘No, Linda, hang on,’ said Norrie, grabbing a hand to get her to listen. ‘There’s something going on, they’ve got an idea, I’m sure of it.’

  She refused to believe it until the doctor offered just a chance, the slimmest chance, of help. ‘There is a machine in Newcastle, it could take over the work of Marc’s heart and keep him going until another heart becomes available.’

  ‘What do you mean?’

  ‘From a donor.’

  A dead boy’s heart. Or a girl’s. A dead girl’s heart in Marc – that struck Linda as even stranger for a moment. But then again, why not? ‘Could it be anyone?’

  ‘As long as the size and blood type are right. You won’t remember this I’m sure, of course – there’s a lot going on for you – but this machine is called an ECMO, or extracorporeal membrane oxygenation machine …’

  Weirdly, those words stayed in Linda’s brain forever, as did the next thing she heard the doctor say. ‘… Make no mistake, Marc is dying right now. There is only a one per cent chance he can survive the journey. He might not even make it off the hospital bed and down that corridor, let alone all the way to Newcastle …’

  ‘What did you say, about Marc’s chances?’

  ‘One per cent. I’m sorry, Norrie, I can’t put it higher than that.’

  Norrie seized the tiny chance anyway. ‘What are we waiting for? Let’s go now!’

  But Linda hesitated – she looked down at her son – she understood what was likely to happen. ‘If my son dies in that ambulan
ce he is going to die on his own, isn’t he? He needs us with him. Please let me and his dad go with him.’

  The doctor was touched, Linda could see that, but she remembers being told it was not possible. They were going to use a specialist intensive care ambulance to take Marc to Edinburgh Airport, where he would be put on an adapted plane and flown down to Newcastle. There was already barely enough room in the ambulance for the medical staff and all the equipment they needed to fight for Marc’s life. A police escort would take spare oxygen bottles for the ventilator, but one person might be able to squeeze in there and then sit in the back of the plane if it was big enough. That was the best they could do. Another ambulance and patrol car would be waiting when they landed. Norrie said he would go with the cops, if they let him. Leasa, the level-headed daughter, took control of her mum. ‘You’re better off coming in the car with me. We’ll go down together.’

  Linda was terrified. She was panicking and pleading in her head, praying, ‘God, can I make a deal, make a pact?’ Then she got an idea so crazy that she thought it just might work. She grabbed the doctor’s arm tight and yanked him, demanding his full attention. ‘Listen, I’m forty, I’ve had my life, can you not give Marc my heart, here and now?’

  She meant it, too. They could have put Linda under with anaesthetic right there and then and taken a knife to her chest, pulled out her heart to give to Marc and left her dead and she would have let it happen, without hesitation.

  ‘I’m serious, I’m telling you, why not?

  ‘Please, doctor, please. Please give my heart to my son.’

  They couldn’t. Of course not. No doctor would kill a healthy mother to save an ailing, almost-adult son, no matter how much she pleaded. The others all knew that.

  ‘Come on, Mum. Come on,’ said Leasa, pulling her close. So once again Linda had to let her boy go, despite every instinct telling her that this journey would be his last, feeling that prayers were all she had left.

  ‘Please, God. Don’t let him die on the way.’

  Four

  Martin

  Hot and sweaty from playing football and thirsty for milk from the fridge, Martin Burton got back to his house in Grantham on that Tuesday evening to find there was nobody else home. His big brother was at his girlfriend’s house for tea and would spend the night there. He already knew his mother Sue was at the swimming pool with her friend. Martin had eaten his dinner before going off to the park but now he wanted a big bowl of Coco Pops. If he ate a bit too much sometimes, well then he burned it off. A restless lad, he was always on the go and up for a laugh. The telephone rang and it was his father calling from America, where he was on a desert exercise with the RAF. It was a happy, chatty call of the kind they always had when Dad was away.

  ‘Am I going to get a cuddly?’

  ‘Sorry son. You’ve got plenty. This isn’t a cuddly place – they don’t have a lot of cuddlies in Las Vegas.’

  It was no big deal, he always asked that. They laughed about it then said goodnight.

  ‘Love you, son.’

  ‘Love you, Dad.’

  However many miles were between them, they were still close. Nigel was a military man but his sons meant the world to him.

  When the call was over, Martin probably turned up the television louder than Mum usually allowed, because he didn’t like to be on his own. Big Brother was his favourite, all those people going mad in a house like a prison, only it looked fun with the stuff they had to do, dressing up and playing silly games. A big lad in a kilt called Cameron had just won it a month before and he was nice. Martin bounded up to his mum for a hug when she came in from swimming, her hair still wet. They sat together for a while watching the box, his legs over hers. This was a bit uncomfortable because Martin was a growing boy of sixteen and she was petite – ‘but you’ve got to enjoy having them close while you can, haven’t you?’ That was what she always said. Her other son had grown up so fast and, proud as she was of the man he was becoming, she missed him as a boy. Nothing was wrong with Martin that night. Nothing at all. She left him watching the telly and went to bed. ‘Be quiet when you come up, will you? I’ve got work in the morning.’

  Sue was a small, neat woman with a short dark hair, serious glasses and an efficient manner. She liked an orderly home, which was a challenge with teenagers. Still, they knew very well that they were loved by their mum. She had flashes of temper about things like leaving dirty washing all over the floor but Mum also knew how to have fun. They lived in a detached house with a garage and a drive on the edge of Grantham, a quiet market town in the flatlands of Lincolnshire, best known as the birthplace of the former Prime Minister Margaret Thatcher, not that there was much to show for it. Grantham didn’t like to make a fuss, and the Burtons were a bit like that too.

  They had moved to the town when Nigel was stationed at a local airbase. It seemed sensible to buy a house and make a family home somewhere, rather than travel all over the world after him. Nigel had been to war once in the Balkans and twice in the Gulf since then, but the boys were safe and settled in Grantham. Now their youngest was just on the verge of becoming a man, says Sue. ‘Martin was just getting to the age when boys gain maturity and he had started to be a bit more sensible. Girls had come on the scene. There was a big gang of boys and girls who used to hang around together. His body and his personality were changing. When he went to bed he was a normal, happy teenager.’

  Sue woke at two in the morning because of the noise – there was a lot of banging and bumping coming from Martin’s room across the landing. This wasn’t fair, she had to get up early for work. ‘Martin? What on earth are you doing?’

  She sat up in bed just as her son appeared in the doorway, a silhouette in the dark. He looked strange in the half light, but she couldn’t say why. Martin looked into the room at his mum but somehow looked right through her, as if he couldn’t see or recognise her face. ‘Martin?’ His answer was just a mumble. Was this one of his jokes? Had he fallen out of bed and banged his head?

  ‘What’s the matter, love? Stop pratting about!’

  He mumbled again and took a couple of steps forward but his knees buckled and he collapsed, face down, on her bed. Frightened now, she shook him but he slid off and rolled onto the floor.

  ‘Get up! Come on!’

  But Martin was slumped against the side of the bed in his pyjamas, the shirt riding up. His mother touched his face and it was warm but not fevered. She stroked his hair once, maybe twice, trying to be calm but feeling the fear rising as she wondered what on earth to do. The only phone was across the landing in the spare room so she ran in there to phone for an ambulance, calling back, ‘Hang on, love. Hang on.’

  ‘Is he breathing?’ the emergency operator wanted to know, so Sue rushed back to check, rolling Martin into the recovery position as best she could. He was a big lad. Breathing, yes. With a guttural noise like a deep snore that scared her. ‘That’s when I realised it was serious. He wasn’t getting up. But it still never entered my mind that this could be life-threatening.’

  The operator was clear and precise. ‘Okay, can you open the bedroom curtains please and put the light on so the ambulance driver can see which house in the street is yours? Then I need you to go downstairs and unlock the front door, is that okay?’

  The ambulance arrived within minutes.

  ‘I saw the flashing lights outside from the room upstairs. I called from the top of the stairs and they came up. They shone a light into his eyes, asked me what had happened and got him straight on to a stretcher.’

  Sue pulled on a T-shirt and some jeans and found her purse and keys. ‘They wouldn’t let me in the ambulance until they were ready, but they did say, “Have you locked the door? Have you got your phone? You’re going to need to make some calls.” All the practical things they are trained to say, I guess. They wanted to make sure I was leaving the place secure. I just wanted to go.’

  She rode in the ambulance with her son, holding on hard as it swayed around corner
s. ‘This was two in the morning now and the Grantham hospital was only two miles from our house, so it took minutes, literally. Martin looked fast asleep. They got him out of the ambulance and into the hospital, then they were like, “The waiting room is over there …” They whizzed him off through some doors, which promptly slammed behind him, shutting me out. I was stuck in the waiting room, the only person there. There was not even anybody behind the desk because it was the middle of the night and the main doors were locked.’

  There were no other patients waiting to be seen, the little hospital was empty. The hard plastic seat pinched the back of her legs. She shivered. This was the quiet time between the last of the drunks and the first of the morning casualties. The calm before the dawn. The moments piled up, crowding her in. Sue was getting cold and scared but she was made of strong stuff. This will all work out, she told herself. No need to panic. ‘Somebody came and took notes: name and address, date of birth, allergies and that sort of thing. Then some young doctor came and asked me, was there a chance Martin had taken any drugs? I was pretty sure the answer was no.’

  The doctor was insistent: ‘What about his brother, would he know? Could we perhaps ring him, just to make sure?’

  ‘No, we cannot,’ said Sue, rattled. Christopher had just turned twenty, he was sleeping over at his girlfriend Ashley’s house, his mother did not think it was appropriate to disturb him. ‘Unless you have got good reason to believe it’s drugs, I’m not waking Christopher to ask him.’

  So then she was left alone again, on her own in the empty waiting room. Her mouth was dry, her eyes felt raw. A nurse came after a while and asked if she wanted to ring someone and ask them to come over to the hospital, but Sue said no. ‘I’m a Forces wife. I’m a big girl, I’ve spent a lot of my married life on my own, I’m used to handling things. I am not waking anyone at this hour just because my son has bumped his head.’