The Boy Who Gave His Heart Away

by Cole Moreton

  The families of the people who give their hearts and the people who receive them are usually kept apart, and direct contact between them almost never happens. It could get very complicated. But Marc McCay was not prone to rushes of emotion, as he told a psychologist when she came to see if he was feeling okay.

  ‘Aye, I am, thanks, no bother.’

  He was not the sort to be fazed by a massive, life-threatening illness, a possible near-death experience and the most invasive surgery known to humanity. Sometimes Marc was so laid-back it was as if he barely knew what was going on. Then again, his mum would catch him in quiet moments with his hand on the dressing on the wound in his chest, trying to take in all that had happened to him.

  Marc was fit enough to be discharged from the ward a month after the operation as long as he lived in the transplant flat. It was a place on the hospital estate where he could stay independently but see the doctors, nurses and therapists every day. His big sister Leasa spent a lot of time with him in Newcastle then, pushing him to the park near the hospital in his wheelchair and helping him to walk again or just hanging out. They became close, and she was able to ask what it had been like for him, to be in so much trouble.

  Marc smiled. ‘I just fell asleep, then I woke up again.’

  ‘And how do you feel, you know, about getting a heart from someone?’

  ‘I’m just happy that I’m here.’

  That’s how he was. As he became more alert, less druggy, he noticed that one of the nurses was cute. She was pretty and had a nice smile, but he was a child in her eyes, so that was a bit of a blow. And it’s hard to make a good impression with someone who has brushed your teeth while you’re in a coma. But a surprise visit one day lifted his spirits.

  ‘I wonder what your pals Donny and Franny are doing the now?’

  ‘Aye, Dad, I know.’

  ‘Be all right if they were down here now, wouldn’t it?’

  ‘Oh aye, it’d be good.’

  Norrie laughed, and stepped outside the room. ‘Next thing, the two of them dived in to see Marc. They’d been waiting there. You should have seen his face. Those boys stayed for days. You could see they were so close, it was great.’

  His younger brother Daryl was eventually allowed to visit, aged just fourteen, and was not too alarmed. ‘Marc was up in the flat and not in the ward. There were no tubes or anything on him. He just looked like he had lost a bit of weight. He showed me the scar on his chest. Everything was just light and easy, dead calm.’

  Daryl had been left at home through all the drama, as the family tried to shield him from the worst of it. ‘I stayed with my Nana. She was dead caring, like my best pal, my second mum. She wanted to tell me stuff but she thought I was too young to have the full situation explained to me. I had been in hospital myself when I was little so I just thought you went off there and got fixed and then everything was all right, because that’s how it was for me.’ He found his grandmother crying in the kitchen after visiting Marc, but told her not to worry. ‘It didn’t register with me that he could die.’

  Linda was worried about Marc, of course. She tried to compensate by taking charge of his care, perhaps a little too much sometimes. ‘We were getting teaching from the nurses, to stop infection. I mean, things like, “Don’t keep Mark’s toothbrush in the bathroom, germs can sit on the surface of your toilet pan.” That’s how delicate it was for him. We would never be able to have pets in the house again, because animals can carry germs which could kill Marc.’

  She felt safe at the Freeman Hospital. ‘They were fabulous, they tell you like it is there. They were saying, “This thing could happen to Marc, but if it does we will treat it with this …” Absolutely brilliant, they knew what they were doing. If we had to pay for medical care, I dread to think how much I would owe the government, honestly.’

  After four months in hospital it was time for Marc to go home, but Linda got scared. ‘I was very frightened. They had support groups in Newcastle but I was going to be a couple of hundred miles away in Scotland with a sixteen-year-old son who had been through a heart transplant with all these drugs, all this terminology that was completely alien to us. What should we let him do? What should we not let him do? Who was going to help us at home? I just didn’t know what we were going to do.’

  The consultant actually suggested they move to Newcastle, but Linda said it was impossible. ‘That wouldn’t have been any good for Marc. He was a home bird, he loved Lochwinnoch and all his friends. He wanted to see his sister and his brothers on a daily basis.’

  There was something else, too. The ‘Get Well’ cards had been joined by others offering congratulations. People seemed to think his struggles were over, but that just wasn’t true. ‘Transplantation is not a cure – it is the swapping of a life-threatening scenario for a medically-managed condition,’ says the Children’s Heart Foundation in its advice to families. ‘In fact, you will be realising that medical intervention will go on throughout the child’s life and that his or her future is uncertain.’

  Marc would be home in time for Christmas but he was still very much in danger. One transplant patient in ten dies within a year of getting a new heart. There’s only a fifty:fifty chance of surviving for a decade and after that the odds get a bit hazy, although they are slightly better for young people. But then every day is a bonus, that’s what you’re meant to say. ‘Concentrate on the positive,’ said the ward psychologist, but Marc didn’t need telling. He just wanted to get on with his life, get better and have a good time again … however many Christmases he had left.

  Twenty-Three

  Martin

  Why did Martin die? As the New Year began and life calmed down, that question began to haunt Sue and Nigel. There was only one person who could give them an answer but he was a very busy man, in a hospital they never wanted to see again. Harish Vyas understood that, so he offered to come to them. The lead consultant for a hard-pressed children’s intensive care unit does not usually have time for home visits, but Dr Vyas was an unusual man with a son of the same age and he could imagine some of what they were going through. He picked up a nurse from the hospital who specialised in helping bereaved families and they drove across to Grantham to face questions from Nigel, and first from Sue. ‘Did Martin get this because he had measles as a baby? Was it because of the drugs I had to take for sickness when I was pregnant with him?’

  ‘No, it’s nothing to do with either of those things.’

  Sue took some convincing. ‘If there’s nobody else to blame then you blame yourself. That’s how motherhood works. “I made him, it’s my fault.”’

  Nigel wanted to know if there would have been any signs. ‘Did we miss something?’

  ‘There is nothing you could have done,’ said Dr Vyas. ‘Absolutely not. None of this is your fault. We now know for sure that he had a condition called Arteriovenous Malformation of the brain. There was no way of guessing it was there. Some people have headaches or seizures, which can be treated and are a clue. Other people live their whole lives without ever knowing what is happening in their head. Martin could have lived to be eighty and never had a bleed or it could have happened to him as a baby.’

  There was no good reason for Martin’s death at all then. It was just bad luck. Awful, unthinkable, hideous luck. The Burtons began to understand that more fully as the conversation went on. The bleed was not the result of a blow to the head when he fell out of bed, or anything else. Their son had been born with a problem nobody could see, sitting there silently all his life: a snag in the system that sends blood to the brain. A blemish like a birthmark. The blood coming up through an artery is meant to flow into a patch in the brain called a capillary bed, which will take the oxygen away, but in his case – in one, tiny instance – the bed just wasn’t there. The artery connected directly to a vein, which should never happen. It was a tangle, an unfortunate mess. For years it sat there, silently. The blood pressure built up where the artery met the vein, but still Martin felt nothing.
Then the blood vessels suddenly burst in the early hours of the morning, said Dr Vyas.

  ‘It’s like a twig snapping.’

  Sue still remembered the deserted hospital. ‘What if he had been taken to a decent hospital straight away, where they had specialist doctors? Grantham is tiny. Did he die because we live near a small hospital?’

  Again, Dr Vyas said ‘no’ to Sue’s questions, gently but firmly. ‘The bleed was so massive that it was unlikely he was ever going to survive.’

  The Burtons were slowly persuaded, says Nigel. ‘You felt the doctor’s compassion. His understanding. We were grateful for what he had to say.’

  Sue agrees: ‘He convinced me that the things I was worried about were irrelevant. Martin was born with this condition. Where we lived made no difference, it just all happened so quickly. I did need convincing of that.’

  There was something else on their mind, though. What about Christopher? Could this happen to him? They were terrified of losing their other son, and he was scared too. Harish Vyas remembers that he could sense how frightened they were, so again he did something unusual to try to help them. ‘Statistically, it is very unlikely that Christopher would have had any problems but we organised an MRI scan on him, the results of which came out as completely normal. That reduced the amount of anxiety and unhappiness they were living with.’

  The Burtons didn’t ask this, but what could the doctors actually have done if they had found something wrong in Christopher’s brain? ‘That is a very interesting question. If you interfere with the blood supply in the brain you can end up with a massive stroke. And if the problem is in what we call ‘tiger country’, where surgery would cause more harm than good, well then, where does that leave us? I really don’t know.’

  As Dr Vyas remembers the conversation they had, he begins to look quite sad. ‘I do feel very emotional about this. It is not something I can look at dispassionately, because it is somebody’s child we are talking about and in this case that child died. It doesn’t stop me being professional and objective about clinical management, but as I said to Nigel at the time in the ward, as they were taking Martin to theatre, the day I stop thinking about the patient as another human being with a family that is going through grief is the day I ought to stop working. Really.’

  There was another, very private reason why Harish Vyas cared so much about this case. It was not just that he had a son of the same age as Martin, but also that he had made a promise a long time before, to a man he loved and admired more than anybody else in the world. He doesn’t talk about it often, but that promise was made in a way that resonates with all that is to come.

  Harish qualified at Guy’s Hospital in London in 1975 and soon after that his grandfather came to visit from Kenya. Shambhu was a large, gregarious man who was also now very ill and he had come to England to see his grandson for the last time. He made it clear that these were their final days together, then asked this boy he loved so much to make a vow: ‘Promise to me that you will never be corrupted in medicine.’

  Harish was taken by surprise. It was a strange request, although he knew his grandfather had come across doctors in Kenya who were corrupt. Those who could afford medicine were treated well, while those who could not were left to suffer. Shambhu had organised, argued, campaigned and cajoled on behalf of the poor and set up charities to help them. Now that his grandson was in a land where everyone had the right to treatment for free from the cradle to the grave, Shambhu wanted him to swear that he would play a full part in that wonderful enterprise. ‘Of course I will,’ said Harish lightly, thinking it all a bit silly, but his grandfather heard his tone, looked at his expression and frowned.

  ‘Don’t be flippant, please. You have a great gift. Commit yourself to serving your patients.’

  ‘I will.’

  Then the old man took his hand and made him seal the promise in a way that stayed with Harish for the rest of his career. He thought of it every time he looked at a photograph of Shambhu on his desk or on his wall wherever and whenever he went to work. If his hours as a junior doctor were long and wearying and the hospital work was intense, distressing or traumatic, he would look at the image of his grandfather and remember the promise. Then he’d feel his shoulders go back, his chest fill and his head clear. ‘There were times when I felt sorry for myself but I would look at him and think, “No, I’m all right. Get on with it.” He was my absolute hero.’

  His research was into the first breath a baby takes after being born. As Harish hung around maternity wards like an anxious father, he noticed a lovely young Scottish nursing sister called Catherine. As they became friends, then lovers, he told her about his grandfather. She understood that his patients came first, however hard it was to live with sometimes. ‘All doctors married nursing sisters in those days. They were the only females you ever met when you were working all the time,’ says Harish with a smile, knowing full well how unromantic that sounds. Then he adds, with feeling: ‘It’s hard to imagine how I could have functioned without her.’

  They had four sons together but Harish admits that he was often absent, particularly when he took over the paediatric intensive care unit in Nottingham in 1993. ‘It was a unit that needed development.’ For a while he was the only consultant there, so he would stay in the ward all day and all night and all the next day and the next night if necessary. ‘I need very little sleep. I can go for a few days without going to bed, no problem.’

  His wife would bring in food for him. Once, in an effort to spend more time with one of his sons, he promised a day out in Nottingham if they could just pop into the hospital first, to see a patient. Just for an hour, he said. No more than that. The boy, who was nine years old at the time, was happy to sit in his dad’s office and wait. But there was a crisis on the ward, another sick child needed care and the doctor became engrossed. When Harish looked up from his work, he realised it was past eleven at night and his own son had been forgotten all that time, abandoned in the office without anything at all to eat or drink. ‘I rushed back and he was there, absolutely still, looking miserable. Very dry and very hungry. I could not apologise enough. The trouble is that when there is a sick patient who needs to be seen, you forget everything else.’

  The boy forgave him, eventually. They all did, when they were grown men. ‘I’ve lived with that guilt for many years. Now I have had absolution from my children.’

  With age, Harish has become the spitting image of the man who inspired him to become the kind of doctor who would spend so much time and energy caring for Martin Burton and his family even after death. ‘Every morning I look in the mirror and I see my grandfather.’ And there is something more to say about the moment when his grandfather made him vow to stay true to his calling and care for his patients first, all those years ago; something that will echo through this story. The old man took his hand and asked again: ‘Do you promise?’

  Then Shambhu pulled his grandson’s hand towards him, unfurled the fingers, and put the palm up against his own chest. Harish repeated the words, this time with his hand over his grandfather’s heart.

  ‘I promise.’

  There is one thing the Burtons never asked, because in their shock and grief they accepted how things were done, and it is hard for the doctor to answer even now. When exactly did Martin die? Questions like that were easier in the old days. People were considered to have died when their heart stopped beating. That was that. By those old standards, Martin was still alive when they took him to the operating theatre and stopped his heart with potassium before removing it. The heart would have stopped naturally if they had just turned the ventilator off, because he could not breathe on his own, but it would have been too damaged to use. In the early days of transplants, a doctor in America was sued by a family for taking a heart before the machines were turned off but they lost and the law was changed. Now, it is clearly perfectly legal to do so in America if the brain is no longer working.

  In Britain, we are even more specific: death has
occurred when the brain stem has stopped functioning. That means the heart and lungs are not getting the signals to beat and breathe and the body will just shut down without mechanical help. Dr Vyas and his colleague did all the proper tests on Martin and were quite sure that was the case. ‘Legally, Martin was dead when we did the first brain stem test.’

  This was recorded as the time of death and the Burtons accepted that but it is not actually when Martin died – only when the doctors were able to confirm that he had. So the question remains, then: at what point in time between his collapse in Sue’s bedroom and the results of those hospital tests did Martin actually die? Dr Vyas pauses to think, because he wasn’t in the ambulance or at Grantham Hospital in the middle of the night, although he has seen the records. ‘There was intervention. Things like breathing and blood pressure were being manipulated as soon as he got to the first hospital, so it is hard to say. He had a catastrophic bleed at home and the brain continued to die slowly. I can say though that if his mother had not heard him that night she would have found him in the morning dead.’ So the truth is that nobody really knows the answer, although he says there is one piece of evidence that suggests Martin was brain dead when he hit the floor of Sue’s bedroom: the snoring. The deep, guttural sound was a sign that his swelling brain had dropped into the spinal cavity, cutting off its own blood supply and partially blocking his breathing. Just to be sure then, in the doctor’s opinion, was there anything anybody could have done at any point that would have saved him?