The Boy Who Gave His Heart Away: A Death that Brought the Gift of Life

Copyright

HarperElement

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First published by HarperElement 2017

FIRST EDITION

© Cole Moreton 2017

Cover design and illustration Micaela Alcaino © HarperCollinsPublishers Ltd 2017

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Source ISBN: 9780008225728

Ebook Edition © April 2017 ISBN: 9780008225711

Version: 2017-09-20

Contents

Cover

Title Page

Copyright

Introduction

Epigraph

One: Marc

Two: Martin

Three: Marc

Four: Martin

Five: Marc

Six: Martin

Seven: Marc

Eight: Martin

Nine: Marc

Ten: Martin

Eleven: Marc

Twelve: Martin

Thirteen: Martin & Marc

Fourteen: Marc

Fifteen: Martin

Sixteen: Marc

Seventeen: Martin

Eighteen: Marc

Nineteen: Martin

Twenty: Marc

Twenty-One: Martin

Twenty-Two: Marc

Twenty-Three: Martin

Twenty-Four: Marc

Twenty-Five: Martin

Twenty-Six: Marc

Twenty-Seven: Martin

Twenty-Eight: Andrew

Twenty-Nine: Marc

Thirty: Martin

Thirty-One: Linda

Thirty-Two: Marc & Sue

Thirty-Three: Marc

Thirty-Four: Sue & Linda

Thirty-Five: Marc & Sue

Afterword: Marc & Martin

For Marc and Martin

Author’s Thanks

Moving Memoirs eNewsletter

About the Publisher

Introduction

This is the true story of two boys who never met, but who are bound together in the most astonishing way. Marc was fit and fast, a star player in his local football team. Strong and brave but shy and gentle, he had a sharp face, sandy hair and striking green eyes. Martin was big, bright and breezy, a loving lad who was always up for a laugh, with a mop of brown hair and a friendly face that made everyone smile. Their names were alike and they were more or less the same age, either side of a sixteenth birthday, but they lived hundreds of miles apart in Scotland and England and never even knew each other existed. Then, one summer, they both fell down. Just like that, without warning, they were taken seriously ill at the same time. That’s where we begin. One of these boys will die. And without ever knowing it, he will save the other’s life.

This is also the story of their mums, Linda and Sue, who will go through grief and worry enough to break most of us. I have got to know the families, the medics and one of the boys well over several years and this book is based on their own accounts of what happened, which are terribly sad but also inspirational and full of wonders. Towards the end of the telling, the mother of the boy who was lost will meet the boy who was saved, now grown into a man. She will reach out and put her hand flat against his chest, to feel the heart of her own poor son still beating away inside him. Life will have sprung from death, miraculously. But before that extraordinary moment can happen, there must be a tragedy. Marc or Martin. One of these boys is about to give his heart away …

Epigraph

We are not meant to touch hearts. Hearts are away, hidden, at the centre where they can’t be got at. Protected. Vital. The seat of the soul. If a heart is touched, it can only be a miracle.

Louisa Young, The Book of the Heart 2002

One
Marc

Marc was in agony, writhing around on the back seat of the car and calling for his mum. She was driving as fast as she could, up to the hospital and over the red warning lines, straight into the ambulance bay, blocking the way for everyone else. Linda didn’t care. She thought her son was dying. She was right. She leaned on the horn again and again and the loud, flat sound echoed under the canopy, an alarm and a plea for help. ‘Come out! Come on! Where are you?’

Marc couldn’t walk and there was no way she could carry a hefty, dazed teenager out of the car and all the way through the doors to Accident & Emergency, but surely somebody in there would hear the noise and wonder what was going on? A hospital porter came striding over with an angry face but Linda shouted at him: ‘I’m not moving. Not until my son gets seen!’

The porter was confused, he knew her as a friend and a nurse who worked the night shift. Then he looked into the back of the car and saw Marc in a terrible state.

‘Holy crap, Linda – is that your boy?’

Yanking open the car door, he swore loudly and waved at a colleague for a trolley. Marc didn’t answer his questions and Linda couldn’t get the words out right. ‘Just help him, please.’

The porter took hold of Marc under both arms to lift him out and tried to be reassuring. ‘We’ll take him, hen. You get this thing moved, yeah?’

Linda turned the key, put her foot down and the car lurched forward out of the bay. She left it half up on a pavement and ran back through the double doors into the gloomy reception area where the faces of the sick and injured looked up at her. Where the hell was Marc?

‘This way,’ shouted a voice she knew and Linda saw the fuss around her son first. A couple of nurses in blue, busy with machines and a tangle of wires and tubing. More coming over. A young doctor in a white coat saying something about the lad being only fifteen. Marc was on the trolley in the middle of the growing crowd, already with a clear plastic breathing mask over his face and then Linda knew – she just knew, in her shock and horror – that this was as serious as it could be.

‘My poor wee man is dying away …’

‘When the sun shone his hair went blonder. He had lovely green eyes, just like his father,’ says Linda now, sitting cross-legged on a sofa and remembering Marc as a child. Her hands turn over and over on her lap, a little sign of anguish. ‘Marc was a quiet boy. A shy boy. The best boy ever.’ The mothers and fathers of children who have been in danger or lost often say things like that, but they are not deluding themselves. It’s self-defence. If mums didn’t forget the pain of giving birth, no more babies would be born. In the same way, we try to forget how scary it is to be a parent. We wrap the good times around us instead, for protection. ‘He had the best nature of all my children,’ says Linda in her urgent, breathy voice with a strong Scottish accent. ‘Any one of the others will tell you that.’

She had only just turned forty when Marc fell ill in the summer of 2003, but Linda already had four sons and a daughter aged between thirteen and nineteen. The kids had been raised in the beautiful countryside west of Glasgow but they now lived with her or close to each other in houses and flats around Johnstone, a town struggling for an identity. Linda loved being a mum, and thank God for that she says with a laugh. ‘I’d been pregnant for the whole of the Eighties!’

The family name is McCay, to rhyme with hay. She was no longer married to Norrie, the father of her children – a sharp, funny guy who worked as a roofer – but Linda still used his name and he was still in all their lives. ‘Together or apart, divorced or not, we were good parents.’

Linda worked four nights a week as a nursing assistant at the Royal Alexandra Hospital in Paisley, a few miles from Johnstone. She relied on her mother and daughter for help with the young ones. ‘We all hung out together, we were still a close family.’ The boys supported Rangers, the proud old Glasgow club. Ryan, the second eldest lad, was a professional footballer heading for the Scottish Premier League and Marc wanted to get there too, so he played the game any time he could: at school, on the field, at midweek training, in the league on Saturday when the scouts from the big clubs were watching, at the park with his mates on Sunday, anywhere. Kicking and running, shooting and scoring. Banging them in. He was strong and fast up front – the top scorer in his team – a fit lad with a good pair of shoulders and a sharp face under his fringe of sandy hair. He could have made it, says Linda. ‘A lot of people said Marc was a better footballer than his brother. He was a happy lad, chasing his dream. Then a virus came and attacked him, out of the blue.’

Marc was fine when he went away with his big brother Darren that summer, to an all-inclusive resort in Ibiza. Boys will be boys and Linda didn’t dare ask too many questions, but their texts got a bit worrying. ‘The last couple of days he was a bit breathless and said he was having terrible pains in his tummy. I thought maybe he’d caught a bug. I remember standing at Glasgow Airport and seeing him come through to Arrivals. He looked yellow, there was something really not right with him.’

The ache in his bones felt like the flu and the stomach pains drove him to his bed. Linda worried that her son’s liver was failing – she had seen the signs at work – but Marc insisted he had barely touched a drop of alcohol on holiday. His brother backed him up and she believed them both. He was that keen on being fit for the football. ‘I never thought it was really the drink, not for a moment. Alarm bells were ringing in my head. I was thinking, “What’s going on here?”’

Linda left Marc lying on the sofa at home listless the next day, watching television, not eating and complaining of the pain, which wasn’t like him at all. Then she heard groaning and found him tossing about in a fever, unable to take in what she was saying to him. ‘He was even more yellow, a horrible colour. And he was confused. It was as though the light was on and nobody was in, he was so disorientated.’

The locum they saw at the family clinic that afternoon decided Marc had overdone it on holiday, drunk too much or taken whatever lads took at his age. Marc swore otherwise but the doctor didn’t believe him. ‘Go home and rest. Take painkillers. Eat healthy and drink plenty of fluids and you’ll be fine.’ But Marc wasn’t fine. As soon as they got outside the clinic he wandered off up the street, staggering about like a drunk.

‘Come here, son …’

‘What?’

He sounded confused. Then he bent over double, crying and shouting, growling with the pain. Scared, Linda thought fast. She didn’t want to go back into the clinic and face that doctor again. An ambulance could take ages. The hospital was only a couple of miles outside Johnstone, so she got Marc to the car somehow, holding him up all the way.

‘I felt very frustrated, very angry.’

He let her lay him down on the back seat. ‘He was just exhausted and putting his life into my hands: “Mum is telling me to lie down, so I will lie down.”’

Traffic lights and roundabouts slowed them down on the way to the Royal Alexandra Hospital, on a hill just outside of town. Linda was torn between wanting to put her foot down and go fast between the lights – to hell with the speed limit – and not wanting to throw her fragile boy about too much.

‘Sorry, son. Sorry …’

The car park was full and it was too far from the entrance in any case, but the ambulance bay at A&E was empty. Cars were banned but she went for it anyway. ‘I am a very pushy person and for once in my life that was an advantage. I don’t know if it was mother’s instinct or the experience I had of seeing people in that hospital who were very ill, but I knew my son was in deep, deep trouble.’

Linda had seen parents in the ward demented with fear, their faces all wet with tears, and now it was her turn. She knew the doctors and nurses here – their first names, their little habits and irritations, how they behaved under pressure – so she saw how baffled they were by his test results.

‘What is happening to my son?’

‘Linda, I’ve got to be honest,’ said a doctor. ‘We just don’t know.’

Marc’s liver was failing, they told her, but his other organs were suffering too. His life was in danger, but they could not be sure of the cause. He would have to go to the Royal Infirmary of Edinburgh straight away, for more expert help. Linda went all the way to the door of the ambulance with her son, who was unconscious on the trolley as the medics lifted him in. There was not enough room for her with all the equipment Marc needed, they were very sorry. She felt a terrible aching and a longing as she watched the white and yellow ambulance leave the hospital that Wednesday evening, 20 August 2003, with the blue light flashing and the siren telling everyone to get out of the way.

Her boy was being taken away, beyond her outstretched arms. How could she hold him close and safe now?

Two
Martin

Three hundred miles to the south, another teenage boy was playing football in the park. A friendly lad with a wide, gap-toothed smile and a mop of brown hair, Martin Burton was just having a kick-about with his mates in the warmth of a late summer evening in Grantham, Lincolnshire. He wore a West Ham United shirt, partly to wind up his big brother who supported Forest, but Martin was too much of a gentle soul to be properly sporty. He had a fuzz of hair on his top lip and was rapidly growing out of his puppy fat into the hefty build of a centre-back, having just turned sixteen. Emotionally, he was still young for his age though. Martin was a bit of a softie on the quiet, in a nice way. His bed was covered in soft toys he called ‘cuddlies’, brought home by his father Nigel from many trips away with the Royal Air Force.

‘From the day he was born he was always noisy, he was always in your face,’ says his mother Sue, a quiet and reserved English costs lawyer who was in her early forties. ‘He was a “Boy” with a capital B; but he was also a very caring and loving child and a really good friend. Martin was very popular and always helping people. His headmaster said he had a lot to say but he was never in any real trouble, and if the teacher needed any help then his hand was the first to go up.’ Martin told great stories, but something misfired when he tried to write things down. ‘They tested him for dyslexia, because he wasn’t just lazy. He did have a struggle with schooling, but they never could find any reason for that.’

His ambition was to be a nurse and everyone agreed he would be great but his GCSE results a week or so earlier had not been good enough. ‘Martin wasn’t an academic, he was just a boy who loved life. He was too busy having fun to concentrate on what he should have been doing, I’m afraid. His attitude to school was, “I’ve turned up every day for 12 years, what more do they want?”’ So Martin was going to engineering college instead. ‘He was better with his hands. I’m very good with my hands,’ says Nigel Burton, who was a senior aircraft technician in the RAF.

For now, though, Martin could enjoy the sweltering days of late August with his friends. He was fit and happy, says his mum. ‘There was absolutely no sign whatsoever that anything was about to go wrong.’

Three
Marc

The long, bright corridors of the newly rebuilt Royal Infirmary of Edinburgh could have been the set of an American medical drama. Linda McCay wandered them in the early hours of the morning, not really knowing or caring where she was going, clutching a Bible tight to her chest and praying out loud for her boy.

‘Please don’t take my son. I’ll do anything you want. I’m sorry for everything bad I’ve done in the past. I will be a better person. I’ll not smoke …’

Her blonde hair was tangled like a bird’s nest after being twisted and pulled over the six days and nights she had kept up a vigil for Marc in that large, intimidating new hospital on the edge of the city. Sometimes she cried and walked until morning. Sometimes she sat in the chapel. Sometimes she slumped in a chair in a corner somewhere, oblivious to a passing trolley with its urgent crew of attendants or a weary nurse coming off shift who had taken too much crap that night to intrude – and sometimes Linda just prayed and had no idea what else she was doing. ‘Please. Anything. I promise, I promise …’

In front of her, a man thumped the vending machine with the flat of his hand, cursing. Linda recognised him as one of the doctors in the team trying to keep her son alive, a crumpled figure in need of an iron for his shirt but with an air of authority. There were bags under the bags under his eyes, but she knew Marc’s life depended on him and his colleagues. The doctor gave up on the machine for a moment and offered Linda a weak, weary, sympathetic smile.

‘Your son has been unlucky. Very unlucky indeed.’

A virus had probably attacked Marc while he was on holiday in Ibiza. Maybe a snotty kid had wiped his runny nose with the back of a hand, before leaving an invisible smear on a table top or a drinking glass. The little boy would never have known he was a carrier. A fever was easy to miss in a hot place, if you were in and out of the pool all day. Anyone could have come along and picked up the virus in that smear but it was Marc who did so, perhaps as he took a drink or lay down a poker card on the table. Maybe he put his fingers to his mouth just then, absent-mindedly. Maybe he stopped a sneeze. Maybe his eye was irritated by a trace of sun cream, so he rubbed it. Either way, the bug entered his body. That was when his luck turned really bad.

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 ambulance 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.’