The Boy Who Gave His Heart Away Read online

  Mr Hamilton went on to work in Leeds and at Great Ormond Street Hospital, building his reputation and specialising in children in the early days of heart surgery in Britain. ‘Lots of patients died at the beginning. We didn’t have the sophisticated blood tests and clotting products we have now and they had to be really sick, with no other alternatives, before they were referred to us. I learned from a generation of senior surgeons who had to be slightly mad to keep going.’

  The pressure then was immense. Any child might die under the knife and any slip of the hand might kill them. ‘It’s a very fine line you walk between confidence in yourself and arrogance, and some people tip over onto the arrogant side. It’s self-protection. Once you start doubting yourself it is time to stop. A couple of deaths can destroy you, psychologically.’

  Mr Hamilton had been at the Freeman for a dozen years by the time he stood over the sedated body of Marc McCay. His own son was twenty-two years old and his daughters were twenty, eighteen and fifteen. He was just into his fifties, and well aware that he had been an absent father. ‘When he was young, my son said, “Can’t somebody else’s daddy look after the sick babies for a while?”’ But there were very few surgeons doing what he did and he felt a strong emotional connection to his patients. ‘When you see a young person coming in for transplant who has been cut down in their prime as Marc was, that is really difficult.’

  Even if Marc McCay survived the operation and his body did not reject the heart immediately, there was a strong chance he would die within a year. Then again he would die much sooner if they did nothing. This boy was as close to death as anyone could be, but Leslie Hamilton might have it in his fingers, his brain and his power to save his life. ‘Why do children’s heart surgery? Because the rewards of seeing a child get back to normal and live a full life again … it doesn’t get any better than that.’

  He had to cut his way into Marc’s chest to get to the heart. That meant scoring a line down the centre of the breastbone with an electrical saw then sawing right through, being careful to stay in the middle. ‘If you cut through the ribs by mistake it would be messy trying to put the bits of that jigsaw back together again afterwards.’ Smoke rose from the lining of the bone as he burnt it to stop the bleeding. Then Mr Hamilton used a hand-cranked metal spreader, like a clamp in reverse, to pull the two halves of the breastbone apart and keep them in place with its claws. The whole thing was as brutal as butchery, but more precise.

  The heart is enclosed in a white, oily, shiny but leathery sack called a pericardium, so he cut that open – but the surgeon did not start to remove Marc’s swollen heart from the body until he knew that the air ambulance had touched down and the new heart was on its way to the hospital by road, a journey from the airport of about twenty minutes. ‘We didn’t want to take any chances about that.’

  The four natural tubes that lead into and out of the heart were now clamped to stop the flow of blood and so a machine was officially doing the job of the heart completely, as it actually had been for Marc since he first got to the hospital. The old organ was slowly cut away and lifted out. ‘Marc was so sick, his heart was so much bigger than would have been the normal heart in a sixteen-year-old. Sometimes we can retrieve the valves and use them in heart surgery for other patients, but this was just one big flabby bag of very thinned-out muscle.’

  Lynne Holt rushed into the operating theatre, wheeling the picnic box with the new heart behind her, and could see the old one was a mess. ‘It was lying there in a bowl, just so damaged. Quite often, hearts still beat for five or ten minutes after they have been removed from the body, but that did not happen this time. Marc’s old heart did not beat. It didn’t really look like a heart at all.’

  Martin’s heart was also lifeless at that moment, as it was lifted off the ice in the box and put in a silver metal bowl. The first of the three clear plastic bags was cut open and the scalpel thrown away, because it was no longer sterile. Then the next bag was opened, and the next, until Mr Hamilton could see the heart was healthy and there was a good chance this was going to work if he did his job right. ‘We were ready to start sewing in the new heart as soon as it came out of the box.’

  The clunky magnifying lenses made his glasses heavy, but he was used to that. He needed them to see the fine thread, like fishing line, with which he would sew the plugs of the new heart to the pipes of Marc’s body. The first connection to be made was on the back of the organ as it was going to sit in the body, so the assistant held the heart over Marc’s chest, tilted on its side in his hand. ‘You have to make sure you don’t get anything twisted,’ says the surgeon, who made the first stitches then slid the heart down into place in the chest cavity, after a careful check. ‘You want to make sure your stitches are in the right place so they don’t bleed afterwards where you can’t get to them without taking out the whole heart again.’

  The front of the heart was next, including the aorta – the main artery that takes blood away to the rest of the body. ‘We hadn’t finished the transplant but we did take the clamp off and allow Marc’s blood to flow backwards into the new heart at that point, because what happens next speeds the whole operation up and is truly extraordinary, even for me. I never get tired of seeing it.’

  The new heart was still cold, yellow and lifeless, still full of the potassium solution that had been used to stop it back in Nottingham, a little over four hours earlier. This fluid is used to enact the death penalty and stop the hearts of murderers in America, but what was about to happen here was a reverse execution. A heart coming back from death to life.

  Blood flowed into the new heart, flushing out the potassium and slowly warming up the organ. The colour began to change in response, from white and blue to pink and red. Then suddenly, without any help, there was a twitch in the meaty muscle. A tiny convulsion. Then another. A wait and then another, growing in strength and regularity until the new heart was suddenly beating away fully in the open chest. Ba-boom again. Ba-boom.

  This looked miraculous, even to an experienced surgeon who knew what was happening and why. ‘It’s a natural phenomenon. The heart has a natural pacemaker within itself, a small area of tissue that sends an electrical impulse to the rest of the heart and makes it beat.’

  The electricity is created in the first place by a chemical reaction in the blood, but that’s the science. Feelings are something else. Leslie Hamilton has a cool command of his subject, but he does become emotional when he talks about the wonder of a transplant. ‘When you start training in surgery and you take a heart out for the first time, you see this big space in the middle of the body where the heart used to be and you think, “This is crazy.” Then you put in the new heart and it fills the space but it is this little, collapsed bag sitting there, flaccid and empty. You take the clamp off and see the blood go in and it changes colour. You get the first couple of beats that start, then it becomes a better rhythm and suddenly it just starts to beat normally. It’s an amazing thing.’

  His voice cracks as he remembers how that happened to Martin’s heart as it lay in Marc. ‘It was cold, it was motionless and doing absolutely nothing and then it was full of blood and beating … that is one of the most amazing sights in surgery.’

  Elation had to wait. There was a complication. Marc’s old heart had swollen so much that the pipes into his body had been pushed back and the new heart was too small to fit. The surgeon had to fill in the gaps with patches made from the lining of a cow’s heart. Now was the time to find out if this was all going to work, by weaning Marc off the machine that had been keeping him alive between hearts. Slowly, the perfusionist sitting behind Mr Hamilton reduced the pace at which it was pumping blood, until Marc’s new heart was doing all the work. ‘That’s the moment of truth. Sometimes the heart just blows up like a balloon and you know you’ve got problems.’

  The team waited. Twenty anxious minutes.

  ‘Even when the perfusionist has switched the heart-lung machine off, we wait for a while with the tubes still
in place, just in case. When we are happy, we take out the tubes and wait for another while. If that’s okay, we close up his chest and take him back to intensive care.’

  The surgeon had to decide whether to let his colleagues close up the body so he could go down to the ward to see the family. ‘You don’t want to go too early. You don’t want to get your fingers burned. The last thing you want to do is go and give them false reassurance.’ He did once tell a couple that their newborn had died, when behind him in the operating theatre his team was watching the little baby come back to life. ‘In Marc’s case, the heart worked well and everything seemed fine.’

  Marc left the operating theatre just before noon on the Friday, twelve hours after going in. He would still be on a ventilator for his lungs for at least the next twelve hours and in a coma for quite a while yet before he was allowed to surface, and that would be full of risks too. Some patients still die in the first few days after a heart transplant, although not as many are lost as there used to be. It’s still a huge, traumatic operation that tests the will to survive both mentally and physically. One in five heart transplant patients die in the first year. Half die within a decade, says Leslie Hamilton, although younger people are slightly more likely to survive: half of them will go on for at least fourteen years.

  ‘We don’t know which ones will survive and which will die. One of the difficulties is that death is seen as a failure of medical treatment, but there is a time when it is natural to die. With Marc, it was about watching and waiting for nature to take its course, allowing the healing process to kick into action and supporting his body over the next few days. His kidneys had been hurt by the fact that his heart was so sick. Marc was going to take a very long time to recover fully. If he ever did.’

  Fifteen

  Martin

  Sue’s parents, Len and Joan, drove her and Nigel home to Grantham, to the neat detached house with the flowers in boxes outside and the cat sniffing around wondering where everybody was and Martin’s shoes in the hallway and his cuddly toys all still lined up on the bottom bunk in his room. The scent of him was still in there, all as it was before his death, and Nigel and Sue walked past it all as if in a trance and got into bed together and slept.

  They were completely exhausted, way beyond shattered, having been up for days and lived through the most traumatic times of both their lives, facing the worst heartbreak a parent can endure and finally they slept. They slept like they had never slept before and would never sleep again. But Martin woke them up early. It wasn’t really him, of course, but it was coming from his bedroom. The sound of his alarm going off at five past eight on the Friday morning. The sound that wouldn’t stop. Nigel couldn’t work out where it was coming from or what the hell was happening but then he realised through his fog that the sound was an echo of Martin. He had set his alarm when he went to bed that night because he was heading for college to enrol the next day and it must have gone off every day while they were in hospital because here it was, going off again and again. And again.

  ‘I rushed through to the bedroom and killed the alarm but the damage had been done. Then it all came back to me, vividly. Our son had died. He was dead. He wasn’t there. It wasn’t a terrible dream that we could snap out of, it was real. Horrible.’

  He felt like smashing the alarm clock. ‘I wasn’t angry at the actual clock but it was the focus for the situation we were in and there was this intense anger at the taking of the life of a healthy sixteen-year-old who had everything ahead of him and I was just left with this emotionless grief. It took a lot of control to just turn off that clock and put it back down on the window ledge.’

  They did not know this at the time, but the alarm went off around the time Martin’s heart was beginning to beat inside Marc, hundreds of miles away.

  Sue woke up bewildered and in real physical pain. ‘At first, you honestly wonder how you are going to live with a grief that is so intense. We were only in our forties; I imagined I would always feel how I felt that first morning, I didn’t think it would ever change and I just didn’t know how I was going to deal with it.’

  Heartbreak is real. It hurts like the heart is actually breaking. Like a burning, like a chilling, like a scream under the ribcage. The aching. The shock. The numbness. The nausea. The tiredness. All at once. Like electricity in the veins. Like the weeping that will not come, because tears are not enough. Sue was raging at the world for being so cruel but she kept it all locked inside her, like a bomb going off in her chest. She couldn’t eat, her stomach was churning and anyway nothing tasted of anything anymore. She couldn’t sleep, her mind was continuously replaying the night of Martin’s collapse and it just would not stop. Someone would be talking to her and she would not be listening, she’d be reliving those moments, without wanting to. Over and over again. It was exhausting. She couldn’t concentrate on anything, couldn’t settle.

  Nigel was in his own world too. They were avoiding each other, treading on eggshells as they paced around their house that suddenly felt so empty. These were sensible, resourceful people, but death unravels us all. ‘We just crashed. You just don’t function after a thing like that. You don’t want to eat, you don’t want to cook, you don’t want to shop. You don’t want to get up, get washed, get dressed. You just want to sit there. You can’t think for yourself. You’re in shock.’

  They did try to get on with things that needed doing over that weekend, but it was impossible. ‘There’s this emotion that hits you again and you just stop in your tracks, sit down and go back into tears at the realisation that your son has gone, you won’t see him again.’

  Sue was usually so busy, but now she just stopped too. ‘I remember spending hours just staring out of the window at nothing. A lot of deep sighing is common in that very early stage of grief. We tried to be good parents, we’d brought our children up well. I didn’t understand why we were being put through this.’

  Standing in the kitchen, she noticed blood on the knuckles of her eldest son’s hands and snapped at him. ‘What have you been doing?’ Christopher was reluctant to say. Nothing, he said, but it wasn’t true. ‘He’d been outside thumping the wall,’ remembers Sue, who was troubled. This was really not like him at all. ‘Chris was – and still is – the most laid-back, peaceful-natured boy. I don’t think he ever thumped anybody in his life but both his hands were bleeding, which was awful.’

  She knew what was going on and it cut through the numbness to make her feel again, hurting for her big boy. ‘He was at the worst possible age to lose his brother, having just turned twenty. If he had been younger, he would have shown his emotions another way: children can’t help it, they cry. If he had been older, he would have been able to talk about it and thrash it through that way. Young males of that age can’t show their emotions, they don’t get upset and cry, they get frustrated and angry. I just wanted to give him a hug and let him cry but he wouldn’t. You can’t change people and that was his nature then, awful for him though it all was.’

  Nigel understood why Christopher was so angry. ‘He always protected Martin. He always tried to look after him and he defended Martin sometimes on things that weren’t defendable, but that was his instinct. So he was in this position where something terrible had happened to his little brother and there was nothing he could do about it and that frustrated him so much.’

  As a father, Nigel also felt guilty that he wasn’t able to give Christopher what he needed at that moment. ‘The bottom had just fallen out of my world. You feel sorry because you have another son but at that moment in time your sole focus is on the child you’ve just lost and what’s happening to him and what could’ve happened – what he could have done in life – and your loss, the things you’re going to miss out on now you’ve lost him. You think, “How do we put this back together and how do we have a life?” How does a life resume after such an all-consuming loss? Losing a child is a terrible thing to have to happen to any parent, it grips you really hard and you think, “How do I climb out
of this hole?”

  ‘Initially, you don’t think you will. It takes weeks and months before the light starts to come and you see where you’re going to go and how you’ll proceed. That’s when friends really do help. It’s hard to do even the simple things like cook, so our friends brought food round – shepherd’s pie, lasagne – just to keep us going. They would sit there and hold your hand and let you weep and cry and they would just be there for you. That’s what you need at that time.’

  Christopher had Ashley and she was a huge help, says Sue. ‘She was only eighteen at the time so she had a lot to contend with, but Ashley stuck to Chris like glue and went through everything with him, every step of the way. I will always be grateful for the way she was over those days, and her family as well. They were amazing to him.’

  So the Burtons had people around who could help that weekend after Martin’s death and that was good, because they were going to need them. There were very challenging days to come.

  Sixteen

  Marc

  He’s in a fish tank, thought Leasa. She was looking through the thick glass of the window into the isolation unit on the high dependency ward, because the nurses wouldn’t let her in to see her brother. Only Mum and Dad could go in through the double-door airlock and they had to wear plastic gowns. If they had any sniffles, they had to stay out in case he got an infection. She stood there all morning feeling self-conscious, staring into the room with little awareness of the bustle of activity around her, although when trolleys came past her backside she had to squeeze in with her nose to the glass. Everything was clinical and white in there, but the weak light from the strips in the ceiling and an outside window on the far side of the bed gave it all a strange, sickly, greeny-blue colour, like the water in an aquarium.