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