The Boy Who Gave His Heart Away Read online

  A heart had to be found from somewhere fast.

  Ten

  Martin

  Nigel called the hospital at Nottingham again just before he boarded the plane to Pittsburgh very early on Wednesday morning in Las Vegas and he was answered by his mother-in-law, Joan. It was now the Wednesday afternoon in England, about twelve hours after Martin’s collapse. Joan said nothing had changed since the last call.

  ‘My wife wasn’t talking to me, she didn’t want to leave Martin to come to the phone, so I knew it was very serious. I was starting to get the feeling that this was not going to be a good outcome.’

  Nobody spoke to him on the four-hour flight across Middle America, as they passed from west to east over the deserts of Utah, the mountains of Colorado, the plains of Kansas, then Illinois, Indiana, Ohio and finally, Pennsylvania. The couple in the next two seats slept all the way, so the introverted Englishman was left alone, thousands of miles from home and five miles up in the air, with dark feelings of guilt. ‘I was in the wrong place. I couldn’t have been further away from him if I had tried. It felt wrong. I was thinking about the times when the boys said I was never home.’

  He loved them both dearly, more than they knew. His way of coping with all the time abroad was to crack on with work and try not to mope, but he gave them his full attention when he was home. Now the feelings that he usually tried to keep in check began to rise and threatened to flood over him. The wait at Pittsburgh International Airport was three hours. Nigel found a payphone and called the hospital straight after arrival and got through to Joan again, who said the same as before. He put the phone down, walked through the crowds to the departure lounge and found a seat in a corner. ‘That’s when it really hit me: I was going home to say goodbye and switch the life support machine off. They needed my authority. I put my coat over my head and just wept and wept, because I knew I had lost my son.’

  The thought was overwhelming, even though he had no real confirmation. This was just a hunch but it was a powerful one and it broke him. Fellow passengers of all ages were all around but Nigel felt completely on his own as he hid inside his coat, doubled over, sobbing and sobbing, rocking back and forth. ‘I’m amazed nobody from security came over to say, “Why are you acting like this?” Nobody came to me or spoke to me. Nobody did anything. I would not wish that journey on anybody.’

  Deep in his sorrow, Nigel went back over his last conversation with Martin on the phone again and again. ‘I was sorry the last thing I had done was to deny him a gift. There was no sign of anything being wrong before I left. Did we miss something? Was there something more we could have done? It was just grief, sodden grief that I had lost my son and there was nothing I could do about it.’

  Nobody had actually told him Martin was dead or even about to die. ‘I was just assuming. There was a little nugget of hope that I was wrong but I don’t think I honestly believed that. I felt like I just wanted to sit there and not do anything else, just put my head in my hands and weep and cry, but I couldn’t, I had to get back. I wanted to be there for Sue and for my sons.’

  His service training kicked in. Nigel found composure enough to board the aircraft. ‘I just controlled myself because I knew that if I wasn’t careful I wouldn’t get on the plane, and that was the last thing I wanted. I managed to smile at the lady on the gate, hand her my boarding pass, go through and sit at my seat and then collapse again, because I could do that now, nobody was watching me. I could go back into my own little world.’

  The man in the next seat chatted briefly, but they both fell silent after take-off. The screens came down and the movie started: Bulletproof Monk, an action comedy starring Chow Yun-Fat, which opens with a fight on a rope bridge, over a chasm. A young Buddhist completes his training with a master, who tells him this moment is: ‘The end of my destiny, and the beginning of yours’. Nigel couldn’t bear it.

  ‘I took off the headphones and just sat there thinking about all that Martin was losing: his future, his aspirations, his wife to come maybe and his kids, there’s just a huge hole that suddenly appears and you wonder how you will ever fill it. How could a pain like that ever get better?’

  As his father was flying home, Martin was put through another CT scan. He had now been at Nottingham’s Queen’s Medical Centre for more than twelve hours. The results confirmed what Harish Vyas already suspected: there was no chance of recovery. The brain stem controlling his heart rate, breathing and other vital functions of the body had been crushed by the swelling brain and destroyed. Without it, Martin had no hope of surviving on his own. The consultant called for a colleague to give a second opinion and together they carried out a series of tests required by law in a situation like this, making sure that Martin did not react when they squirted cold air into his eyes or cold water into his ears. They watched as the ventilator was turned off for a short while, to see if Martin would somehow breathe on his own. He didn’t, says Harish Vyas.

  ‘The results of all the tests combined together indicated that the brain stem had effectively stopped functioning. In other words, Martin was brain dead.’

  American law says all the functions of the brain have to stop before a person can be considered to have passed away, but in Britain it is enough to say that the brain stem no longer works. Some people disagree, but the law is clear and so is the doctor. Martin was never going to breathe on his own or wake up, it was impossible. His life was over.

  ‘However he looked, lying there in the bed, there was no doubt that he was dead.’

  Sue still thought they were trying to rescue her son and save him from serious brain damage, but all that was about to change when Harish Vyas came to see the family.

  ‘I’m really sorry, but the extent of Martin’s bleed is just so great that there is nothing we can do for him.’

  After a moment of shocked silence, the raw reactions broke through. Sue’s body shook, then the floodgates inside her burst and she shuddered and snarled and howled. The hurt was real. Sharp, physical, hard. Every nerve screaming. Len reached for Joan’s hand. Christopher got angry, and Ashley held on to him. Dr Vyas tried to carry on explaining but he had lost them. Sue wasn’t listening. ‘I had acknowledged that Martin was going to be brain-damaged, that he could be at any level from a vegetative state upwards, but I had not even considered that he was not going to make it. It hit me like a hammer in the face, absolutely full on. I was being told that my child was going to die. Nothing else went in for a while.’

  Harish Vyas could see she was hurting but he kept talking, quietly and carefully, offering what little reassurance he could by saying that Martin had probably been brain dead when the ambulance crew arrived.

  ‘Martin has died peacefully, there was never any pain.’

  Sue thought of her son standing in the doorway before he fell, unable to see her. She had read that hearing was the last of the senses to be lost when someone was dying. Her voice would have been the last thing he heard, calling his name.

  Dr Vyas now had to ask a very delicate question. Perhaps the most difficult question a doctor can ask a mother when he has just told her there is no hope for her child.

  ‘Have you considered organ donation?’

  The timing was brutal but the doctor was absolutely convinced he was doing the right thing. ‘There is never a good time to talk about this. Waiting half an hour was not going to make any difference.’ Putting the question immediately meant the mother could answer before she was swept away by a tsunami of grief. Martin’s lungs, liver, kidney and heart could save or extend lives. His corneas could help the blind see. ‘There is a sense of urgency. If we don’t move early, the organs deteriorate.’

  Looking back, Sue agrees with what he did. ‘You go into shock when you’ve been given this terrible, devastating news and you just collapse inside but then you’ve got to decide quite quickly. I now understand that it has to be quick. I was still compos mentis, before the emotions of what was happening began to sink in. I don’t know whether two or thr
ee hours later I would have felt the same or even been able to answer. I would have gone to pieces and been so grief-stricken, I wouldn’t have wanted anyone to touch him.’

  As it was, she gave her answer without hesitation. ‘Yes,’ she said. ‘Do it.’

  ‘Nigel and I were already on the organ donor register, it was something we had talked about as a couple and agreed on. I would not have been able to put this into words at the time, but deep down, even then, I was looking for something positive to come out of this tragedy. Martin was young, he was a very healthy boy who had never had any time off school because of illness. No part of his body was damaged in any way, except his brain. Even at that point, I could see that it would have been sacrilege to have lost all of those healthy young organs and buried them with him.’

  Sue paused for a moment in the hospital to ask her son Christopher his opinion and he agreed. ‘In the midst of all that grief there was a clarity of thinking. I never ever had any second thoughts. I never, ever saw transplantation as a violation of Martin’s body. I truly wanted to save some other family from going through the nightmare we were going through.’

  The nurses were already working hard to keep Martin stable that Wednesday afternoon, trying to keep him going so that his dad, who was racing there from five thousand miles away, could have a few moments alone with him to say goodbye before the life support machine was turned off. They also wanted his body parts to be in the best possible condition. That was the harsh reality of it.

  ‘Looking after children who are brain dead is a very complex problem. Once the brain stem dies there is an outpouring of chemicals that makes intensive care very difficult,’ says Harish Vyas. Hormones flood the body and the organs begin to fail without the brain to tell them what to do. The lungs fill up with fluid. The blood pressure goes haywire without the signals to keep it under control and the circulation begins to slow and stop. The kidneys start to pour out urine. All this has to be stopped or overcome with drugs. Martin also had to be turned over often, to prevent his skin breaking down.

  Meanwhile, his age, weight and blood type were sent urgently to the office running the NHS Organ Donation Register down in Bristol and samples were taken for blood- and tissue-matching tests. Specialist surgical units were put on stand-by to take his organs the next day. And all the while, says Harish Vyas, the nurses acted as if he was alive. ‘Martin was nursed as if he was a patient who was on the way to recovery. We looked after his skin care, his mouth care and all the other aspects of nursing were carried on as normal. The nurses talked to him, continually. It is our normal practise to make sure we talk to our children and this was not absent in Martin’s case.’

  The consultant’s wife brought in a razor and a change of clothes and he took a shower. He wouldn’t go home until this was over. ‘We didn’t usually lose our patients like this. I couldn’t just walk away.’

  Sue sat with Martin and felt the staff work around her and was touched by their kindness. ‘They were doing all this to someone they knew was brain dead.’

  They put a heated airbed under Martin’s body to keep him warm. A physio came every couple of hours to manipulate his chest and stop mucus building up on his lungs. A friend who had come to sit with Sue pointed out how young and pretty the nurse was. ‘Martin would have liked her.’

  They both sort of laughed. There was a curious relief in that.

  The rest of the ward was still functioning too, with the lights down low. ‘I heard them turn a child away that night because they had a bed but not enough staff. I found that quite hard to come to terms with, when I knew Martin was dying.’

  Sue could not put her arms around him, though.

  ‘That was the hardest thing. All I wanted was to hold him, touch him, whatever, but I wasn’t able to do that because he was wired up and there were nurses surrounding him as if he was a patient they were fighting to keep alive. If we had not agreed to donation, then the machines would have been turned off and all the wires taken out and I don’t think he would have lived for very long. He was too big to put on my knee, but at least then I could have held him.’

  At least she could have let him go like that, bound up in her arms until the end. It just wasn’t possible, though. And she did have extra hours to say goodbye, as Wednesday afternoon became the evening and the night. They were waiting for Nigel to come and say goodbye to his son, but the time was also needed to let other hospitals know the organs were coming and to assemble the surgical teams that could remove them. ‘I couldn’t leave Martin’s side. I knew that I hadn’t got very long. You can stay awake for a couple of days if you have to and I knew that time was limited so I just wanted to spend it with him, even if I was just looking at him.’

  Sue spent her last night with her youngest son sitting in a hospital armchair by his bedside. Not knowing what else to do, she started to talk about the good times they’d shared together, hoping he could hear her now even though she knew deep down that he could not. She talked about the caravan they used to have when he was a little boy and their holidays. The time they went to Cyprus and he learned to swim. ‘You lived in the pool all week. You went on holiday with armbands and you came back without them, we left them in the bin. That was lovely.’

  Sue talked about their trip to Florida, which Martin had loved.

  ‘Disneyland was awesome, remember? You were eleven.’

  All this was her way of saying goodbye.

  ‘That time was precious for me. Looking at him, wiping his eyes with a saline solution, giving his face a bit of a wash. The last things I could do as a mother. They were like last rites.’

  She also kept reliving the moment Harish Vyas told her the bad news.

  ‘The doctor was very clear that Martin was being kept alive by the machinery. They do want to make sure you totally understand that there is no hope. I knew that, of course, but now it began to really get inside my head and my heart. I began to realise that this was real, this was actually happening. I thought, “I gave birth to this child, how on earth do I live the rest of my life facing this loss?”’

  This was the child she had carried in her womb and felt kicking inside her as she sung to him and whose life she had then released into the world. The baby who’d fed from her breast and whose nappy she had changed countless times. The little boy whose hands she held when he took his first steps and whose tears she wiped away when he fell. The infant she took to nursery for the first time, then to school, then to big school, giving him a quick kiss and ruffling his hair and turning away before he saw her tears. The growing lad who made her laugh, who made her cross when he was naughty but who could change her mood in a moment with a smile. The teenager who still called her ‘Mummy’ sometimes, when he wasn’t thinking about it or when he thought nobody could hear. The boy who had sat with her on the sofa that last night at home, invading her space. She ached for that to happen again now, but it never would. Sue had been there for every moment of Martin’s life and she was not going to leave him until the last, however much it was tearing her apart.

  ‘As a mother, you want to care for your child right to the bitter end.’

  Eleven

  Marc

  The McCays were given a flat to use in a block around the back of the hospital in Newcastle but they didn’t want to leave the ward where Marc was being cared for. Linda was over her allergic reaction and back with her clan again by morning. ‘Only two people were allowed in with Marc at a time, so we took turns and we slept upright in the chair or curled up on the two-seater sofa in the family room. I didn’t want to take a sedative, I wanted my wits about me.’

  They were quite a presence. There was another child on the same kind of equipment as Marc – the machine called an ECMO that Linda had no problem remembering because it was the only thing keeping her boy alive, taking the place of his heart. This child was also a boy from north of the border, as the Geordie nurses pointed out, trying to get a smile.

  ‘The Scots have invaded.’

  Lin
da quickly got to know the other boy’s mother and his story. ‘He was a fit and healthy wee boy, only three years old, who’d been running about the garden until a virus attacked his heart, same as Marc.’ But no suitable heart had been found for him and the boy was now out of time. Linda saw how utterly, desperately silent the poor woman was in the moments after her little boy passed away, struck mute by her loss.

  ‘His mum was destroyed. I was thinking, “This is what lies ahead.”’

  Marc needed a miracle, because that’s what heart transplants are. Modern miracles of medicine, bravery and compassion. Healers and doctors have tried surgery for eight thousand years, but they did not dare to touch the heart until about a century ago. They either couldn’t get to it without killing their patient or else they didn’t want to go there at all, because the heart was considered too precious, the home of our deepest feelings and of the soul. Those old ideas echo in our words even now. Listen to your heart, the poets say. Follow your heart. The heart soars when your love is near and breaks when they leave. You wear your heart on your sleeve. You give your heart away. It’s another word for instinct or emotion, the heart ruling the head, but it’s also far more than that. Men and women have believed since the beginning of human history that the heart is special. The ancient Egyptians thought it was weighed against a feather in the afterlife, with a light heart as the sign of a good life. Others have said that the spirit or essence of a person sits in the heart or that God speaks to us there. Islamic scholars regard the heart as the most important part of the body; Christians talk about Jesus living in theirs. No wonder the heart was regarded as untouchable for so long. It’s hard to get to anyway, hidden behind the ribcage, set deep in the body at the centre of everything. Only a rebel, a maverick or a wild dreamer would have dared to think of carrying out a transplant.