The Boy Who Gave His Heart Away Page 6

  All of those words apply to Christiaan Barnard, a brash South African who stunned the world in 1967 by announcing that he had successfully taken the heart of a brain-dead young woman and put it in the failing body of a middle-aged man. The patient died of pneumonia after eighteen days, but by then the headlines had been made and Barnard was an international star. Brilliant, buccaneering surgeons like him went on trying to switch hearts when everyone around them thought it was mad or bad or just extremely dangerous to do. The patients kept dying too. But over the decades that followed, as the science improved, they began to live for longer and longer until the survival times were measured in years rather than days.

  One of the nurses involved in the early days of heart transplants in Britain was a brisk, dynamic young woman called Lynne Holt, who would go on to lead the team looking after Marc McCay. Back in the early Eighties she saw hearts fail with dazzling, disturbing speed. ‘You’d be talking to the patient, having a laugh, everything would be fine. Then you’d notice their blood pressure was slipping. They’d be dead six hours later, after acute rejection. The post-mortem would show they had a stone heart.’

  The solution came – unlikely as it sounds – from an unusual bit of mould found growing in the soil on a high plateau in a remote part of Norway. A rare compound in the fungus was used to develop a new drug called Cyclosporine that could work to stop a new heart being rejected by the body but would not totally wipe out the ability to fight all infection. It was a life-saver and a game-changer for heart surgery in the Eighties.

  ‘After that, you didn’t see acute rejection any more. It transformed the whole process,’ says Lynne, who joined the Freeman Hospital in Newcastle in 1986 as the first transplant co-ordinator anywhere in the country. She took charge of the whole process of finding the right organs for the right patients, getting them into theatre at the right time and supporting the families before and after surgery. Short, blonde and super-efficient, she wore a blue uniform with white trim. ‘The uniform doesn’t really portray the skill and the empathy, you know? A uniform is just the outer covering.’

  By the time Marc McCay arrived in 2003, Lynne was leading a team of highly trained nurses available to help transplant patients and their families at any time, day or night. The hours were insane and Lynne didn’t get to see her four young children as often as she wanted to. ‘They were very used to Mummy not coming home at night and Daddy would read the story. I think you just feel very grateful when you go home eventually and you realise that their having a messy bedroom is not the end of the world.’ Her feelings about being a working mum meant that when a child came to the hospital for a transplant it touched her deeply. ‘That always stopped me in my tracks.’

  When Marc arrived early on that Wednesday morning in late August, Lynne called an office in Bristol. His name was written in marker pen on a white board, at the top of a list of a dozen young patients needing transplants. His case was the most urgent, he was the closest to death. If a suitable heart became available anywhere in Britain, it would now be offered to him. There was still no guarantee it would come in time. The NHS was doing its best for Marc and the team caring for him was world class, but Lynne knew that even they might not be able to save him. ‘Edinburgh had done an amazing job of keeping him alive but they had run out of options. We were his only hope.’

  The day passed slowly for the McCays once Marc was in the intensive care unit, unconscious. They took turns to be with him but several of them were watching the television in the family room at the hospital, just for something to do, when the early evening news came on. There had been a crash on the A1, involving multiple cars. It was terrible, tragic. But somebody, quietly, said what they were all thinking. ‘Could we get a heart out of that?’

  Linda was horrified and said so, but then at the back of her mind, despite herself, she thought: ‘Maybe. Yeah, maybe.’

  ‘Some poor family will have to suffer for us, Mum,’ said Leasa.

  ‘Aye, I know, hen. I know. But listen, we have to be positive. Think about what it could mean for Marc. We’ve got to concentrate on that.’ Linda felt she had to say that to her daughter, but she was also struggling. It was true, after all. They were waiting for someone to die.

  Then it happened, suddenly. A nurse came and told them to brace themselves, because it looked like a heart would be available. A boy of the same age as Marc had passed away somewhere in England, she didn’t know why. Tests were being made and details exchanged between hospitals but the early results looked good. The boy was otherwise fit and strong and had no medical problems, and he was the right blood type too. The nurses began to prepare Marc for surgery, in the knowledge that once the heart was removed from the donor it would have to be raced to the Freeman Hospital and inside Marc’s chest within four hours to have any chance of working properly.

  But nothing happened. The hours went by and Marc did not go to theatre, says Linda. ‘We waited and waited for news until half-past three in the morning. Then they came and told us, bluntly – that’s what they’re like, but it’s the best way to be – that it was not going to work.’

  The doctor said it was impossible. ‘I’m sorry, the young man was involved in a road accident, he went through the windscreen of the car. They could not have known this until they opened him up, but the heart was damaged. It can’t be used.’

  Linda wept again then, releasing all the hurt she had been holding inside all that day, dammed up by hope. She wept for the little lad and his family and for herself and her son too. ‘I was devastated for this wee boy that had been killed but I was also devastated for Marc, who was still fighting for his life.’

  Half a million people die in Britain every year, but that doesn’t mean half a million hearts become available to save lives. Far from it. The number shrinks and shrinks when you take away those hearts that are diseased, destroyed or damaged at the point of death – like the one belonging to the boy in the car crash – or that are perfectly healthy but permission is refused. There’s a big problem here, some say a national tragedy. Most people agree that organ donation is a good idea, but only a third of us carry a donor card.

  There are all sorts of reasons why you might not have signed up for one yet. Maybe you’ve never given it much thought or you don’t want to talk about death in case it comes too soon. Lots of people would say the same. Maybe the idea disgusts you: organ donation stirs up deep feelings. Maybe your religion says the body must be left intact for the afterlife or that bones and flesh will fly back together on the Day of Judgement. Even if you don’t personally believe that any more, those ancient ideas are still so deep that they play on our minds and indeed our hearts. There it is again, the notion of the heart as the home of the soul, not to be messed with.

  There is also the question of trust. Medical dramas like Grey’s Anatomy sometimes suggest that doctors who want your organs for someone they really like will try a little less hard to save you. That doesn’t happen in real life, but it is true that doctors are having a harder time trying to get us to trust them now, because of the medical scandals of recent years. All of this slashes the number of people who decide in advance that they will be organ donors – and even when they do, sometimes they are over-ruled after death. Mothers or fathers, sisters or brothers or lovers choose to ignore what they know the person wanted, because they cannot bear the thought of the body being divided and sent all over the place. They are distressed. It’s a terrible time for them. Some are offended even to be asked, so they say no.

  Incredibly, from a starting point of half a million deaths in Britain every year, only about 1,500 people are able and willing to give up their organs to save other lives. The supply of hearts almost vanishes when you add in the problem of finding one the right size for a child who needs saving, from a donor with the same blood type. Finally, the heart has to be taken out and rushed to the patient before it starts to deteriorate, which is very tricky. There were only seventeen heart transplants for children in the year Marc needed
his. In the circumstances, it is extraordinary that there were any at all.

  Linda was hurting, she got really wound up by people chatting or joking in the hospital canteen or corridors. ‘I was so angry at the world, I wanted to say “What are you laughing at? What right do you have to laugh?” How dare they just get on with their lives? I actually felt quite cuckoo, but I was just reacting as a mum.’

  Her mum and Marc’s older brothers had arrived in Newcastle to join Leasa and Norrie and after the heart turned out not to be suitable they took turns by Marc’s bedside so that poor agitated, exhausted Linda could try and get some rest. She was persuaded to take a sleeping tablet for her own good and had a bath up in the flat before managing to pass out in the bedroom in the early hours. But there was a loud bang as her son Ryan crashed into the place, breathless from having run across the whole hospital and up eight flights of stairs, in a hurry.

  ‘Mum, wake up! There’s a heart. You’ve got to come.’

  She was muddled, drowsy, trying to get her clothes on but failing. Her hands wouldn’t work properly, she kept banging into the walls as a result of the sleeping tablet. Ryan had to help her and take her arm, all the way down to the ward. Linda just wanted to sleep, to block it all out and forget, but she knew she had to wake up for Marc. Their excitement helped bring her round, it was infectious. ‘This is it, here we go,’ she said as the fog in her head cleared, and it was okay if they had to wait a couple of hours for the results of tests to see if this heart was the right one. She could wait; she could pray. As the day went on, she began to have faith that this one was going to work, this time.

  Only it wasn’t.

  The donor was too old. There was too much risk of rejection. The arteries were diseased. Again, they only knew that when they cut him open. The doctor was sorry.

  Linda didn’t cry. She couldn’t. There were no tears left.

  She went in on her own to see her unconscious son, held his hand loosely around the clip and tube and told him again that she loved him, that she was not leaving until he was better, that she would always be there for him. He had to get better soon because his birthday was coming and there would be a big cake and a lot of laughs and everyone would be there, or they could go and eat out somewhere, wherever he wanted and it would be lovely, so he had to get better, okay?

  Marc did not react. He was in deep, far away. The heart monitor pulsed. The ventilator wheezed. The blood machine carried on pumping, silently.

  Linda felt someone standing behind her and turned to see one of Marc’s doctors in the doorway, gesturing for her to come outside into the corridor.

  ‘We’ve found another heart, Linda. A perfect match. This is the one.’

  Twelve

  Martin

  Nigel had been travelling for sixteen hours when the plane bringing him back to England touched down early on the Thursday morning. He had not been to bed for two days and he walked through the airport terminal with sudden flashes of longing, sleep-deprived day dreams of kissing his son on the forehead and having Martin wake up, sit up and say: ‘What’s the matter, Dad? Did you bring me a cuddly?’ His head was in Vegas, it was at home in Grantham, it was in the park playing football with Martin, it was on the Gatwick escalator, it was in the hospital – it was in all these places at once.

  There was a card with his name on it being held up by an elderly gentleman in the line at the arrivals gate. He put down his two enormous kit bags to shake the volunteer RAF driver by the hand. Then he heaved them onto his shoulders again for the walk to the car park.

  The journey north to Nottingham took three hours, against the flow of the rush-hour traffic on the motorway. They spoke a little on the way, but not much. The driver was sensitive and careful not to intrude. Nigel mostly stared out of the window and watched the miles go by. He didn’t know what to think or feel any more, he just wanted to be there. ‘I would have hated not being with Martin when he died and not being able to say goodbye to my son. That would have been very painful.’

  Nineteen hours after he had set off from Vegas, an exhausted Nigel finally hauled his bags into the paediatric intensive care unit. Before he could get to Sue, her mother stepped across his way.

  ‘You know he’s not going to make it, don’t you?’

  Joan was trying to protect her daughter. She wanted to be the one to tell him the bad news first, to take the pressure off Sue, who was in bits in the family room. Nigel was suddenly thrown by the realisation that she had not been entirely straight with him on the phone during his long journey. No, I didn’t know that for sure, he thought, getting angry. His hunch had been right, but that was a father’s instinct. ‘You didn’t tell me, but I’ve worked it out for myself, thank you!’

  It wasn’t her fault, he understood that later. Sue and Joan had both given him as little information as possible. Enough to make him set off for home, but not so much that he would break down in despair. Given what had happened in Pittsburgh anyway, maybe that was wise. Nigel had been awake for more than forty-eight hours straight when he went in to see his son.

  ‘He was pink. He was warm. The only thing he had in his body that I could see was the breathing tube, but he looked like a sleeping Martin. There were no injuries, nothing to suggest the seriousness of the situation. Sue got up, tears streaming down her face, and put her arms around me. We hugged each other and cried. What else can you do?’

  Nigel and Sue were left alone in the room now, just the two of them with their son Martin, for the first and only time. Sue felt enormous relief that she was no longer alone. Her parents, her son and his girlfriend had been great but Nigel was the one she needed. This was too much even for a Forces wife to cope with. It was difficult to know what to say, though. They held each other tight, but only briefly before they both turned back to look at Martin. The nurses continued to watch the monitors through the glass. Nigel was relieved to be there at last, but he was also numb.

  ‘I just wanted to shake him and say, “Martin, wake up! Snap out of this!” But you know that’s never going to happen. Then the nurse comes in again and starts doing things like checking his blood pressure and that brings the reality home.’

  Sue told him quickly that she had agreed to organ donation.

  ‘She knew my views. I said, “Yes, let’s take some positives out of this very terrible, tragic situation. We are going to have to cope with his loss, irrespective of what decision we make, but let’s try to make somebody else’s life better today. Because our lives aren’t going to be better.”’

  Sue had been thinking about it, too. ‘We are going to have to face a life without our child and that is going to be hard, but there are other families out there that maybe won’t have to sit where we are now, if we do this.’

  She was sure Martin would have agreed with what they were about to do to him. ‘He wanted to be a nurse, he was such a lovely boy who wanted to help people all the time and here’s a way he could do that.’

  There was paperwork to sign. A lot of it. The pair of them sat in a small, windowless, airless room on that Thursday morning with the hospital’s transplant co-ordinator, yet more tea and a pile of forms. One each for the heart, lungs, liver, kidneys, pancreas and corneas. ‘You have to authorise every organ. Each time you sign, you think about how this is a part of your child that is going to be taken and gifted to someone else,’ said Nigel.

  They did not agree for the organs to be used in medical research. ‘At the time it seemed a step too far, a little bit too much of a violation to have those organs used and chopped into little pieces and used for research,’ says Sue. ‘I would agree to it now, because I know that without research none of this could have happened, but at the time it was too much to deal with.’

  By now, the word had gone out across the country that here was an unusually suitable donor boy with healthy organs. Matches were being made. Transplant cars were being booked to take the organs away from the hospital in Nottingham to wherever else they were needed. Planes too, as it turned
out. Once his body was divided, the parts would be taken north and south, east and west, although the Burtons would not know to where. But for Nigel and Sue, that last Thursday afternoon was mostly spent watching as Martin’s many friends came to say goodbye.

  They arrived nervous and chatty but usually left in silence, says Sue. ‘I made sure that myself or my mum met every one of them before they went into the room where Martin was, to make sure they knew what was happening, that he was actually dying.’

  The language was difficult. He was not really dying: Martin’s life was over, there was no more brain activity, he was legally dead, even if the rest of his body still looked perfectly normal and was still working, thanks to the life support machines.

  ‘I wanted them to know that he would just look like Martin asleep in a hospital bed with some wires attached, he was not even covered in wounds or bandages and he did not look like a dead body. That was what they were afraid of. Everybody thinks that a dead body is going to be scary, don’t they?’

  The mother of one of the boys brought a carload over. Then a pretty, dark-haired girl from Sleaford called Michelle turned up with her friend, having come on the bus and the train. That was quite a trek.

  ‘I’m Martin’s girlfriend,’ she said.

  ‘Are you?’

  Sue was shocked. Martin was not a boy who could keep a secret, she thought. If anything, he shared too much of his private thoughts and feelings with his mum, it could get a bit embarrassing, but this was something new and unexpected.

  ‘Oh yeah,’ said Michelle. ‘He bought me a teddy.’