The Boy Who Gave His Heart Away

by Cole Moreton

  Help came from a charity called the Donor Family Network. Sue rang them and poured her heart out to someone who listened and it helped her get through. In time, she would become a volunteer herself. For now, she was having to make decisions now about what to do with Martin’s room and his stuff and it was tough. ‘If I had to go in that room I went in and out as fast as I could, for a long, long time. Then of course you get the complete turnaround, where actually going in that room is special, because there are memories in there. It might bring forth tears, but to be in with his things is very special. So you go from one extreme to the other, from not being able to cope even looking at something to actually wanting to hold their clothes, smell their clothes, it’s their room, it’s their things …’

  She was also able to ask how other people had coped. ‘I know people who’ve left everything in the bedroom, even the half-mouldy sandwich. We’ve never kept it as a shrine. We tidied it up and sorted it out. Martin had West Ham wallpaper and curtains and a duvet cover and I found that really hard to see. So it was a very conscious decision to decorate the room so that we could go in there without feeling the pain. It was that or just never open the door.’

  They got rid of the bunk bed Martin slept in and replaced it with a double bed for Chris and his girlfriend. ‘Chris only had the box room with a single bed. We didn’t know how they’d feel about sleeping on a double bed in Martin’s room but they said they would.’

  Nigel and Sue cleared out Martin’s room together, on their knees on the floor, sorting through stuff and talking about their memories. Together, they were able to be quite clear-headed about what they wanted and what could go. ‘I know bereaved parents who’ve got every last thing of their child’s possessions boxed up in the loft, never to be seen again, which to me personally seems a bit pointless. It would get stuck up there and left to the next person to deal with when we’re gone, which would be Christopher, and that is unfair. I don’t want to put that on him. So we did have a sort out and get rid of rubbish. I mean, a teenage boy’s bedroom? I need say no more.’

  Getting rid of his clothes was the hardest. ‘I had numerous sessions where I’d open the wardrobe door, get them out and try and sort them. I’d sit on the floor and sob then put them all back again and shut the door. “Okay, never mind, we don’t do that today then.” I believed that I’d do it when I was ready.’

  She found a clever, creative way to cope, eventually. ‘I went on a support weekend for bereaved parents. Somebody brought along a quilt they had made using squares cut from their child’s clothing, so I started my own quilt. That way you can keep little bits of lots of things without having this pile of clothes that nobody will ever wear. You end up with something beautiful.’

  ‘How many years have you been making that quilt now?’

  ‘Quite a while, Nigel. But I will finish it one day.’

  The Burtons are organised people, that is one of their strengths. ‘We’ve got a memory box. It’s got some of Martin’s school books in it, with his handwriting on. That’s very special. It’s got his cap, his watch, his school tie. Favourite bits and pieces I know I’ll keep forever. I’ve also got his teddy sat on my bed.’ They have a few good photographs but not as many as a family would have now, because smartphones with cameras were not everywhere in those days, says Sue. ‘We’ve got nothing with his voice on. Not a thing. It’s so hard. I can remember what he looked like, just like that, because I’ve got loads of pictures, but voices fade away in your memory. You think you can remember, but you can’t. That is the one thing I would love to have, his voice.’

  Then, as they faced the second anniversary of Martin’s death, the Burtons received another letter from Nottingham. This time the transplant nurse was happy to give the first names of all of the surviving patients who had received organs from Martin and say that each one of them was recovering well. ‘Marc was in the clinic a few weeks ago with his mum and is described as a bonny, blond lad, always happy.’

  They already knew that, of course, because of the letter from Linda.

  ‘The kidney patient, Eric, is still fit and well and despite his age is continuing to work as a plumber. His kidney function is entirely normal and he feels great.’

  The liver patient, Andrew, had to be seen often because of his unusual condition, but he was able to lead a relatively normal life. ‘His disease means that he is extremely sensitive to light and therefore cannot play outdoors with his children. He has decided this year to book a holiday abroad in a villa with a swimming pool. This will allow his wife to play with the children during the day, but he will be able to swim with them in the evenings. He is so looking forward to this. It would have been impossible to have this sort of a holiday without the transplant.’

  That was the most Sue expected to hear from any of them. ‘That’s all the majority of donor families will ever get. We made it clear from the start that we were happy to have more contact but they said that sort of thing just didn’t happen. You’ve got to be pretty sure that both parties are going to be able to deal with it emotionally. They wouldn’t want us stalking people, demanding to know what they were doing all the time and saying, “You can’t do that, it’s not good for our heart.”’

  So that was that. They tried to move on with their lives, missing Martin every day of course and being snagged by grief at unexpected moments, but concentrating as much as they could on the future. Sue and Nigel went to help out with the Transplant Games, a competition run for those who have had life-changing surgery, but a conversation there made her think again. ‘I was in the bar in the evening and got chatting to one of the dads. He was a bit over the top when he found out I was from a donor family and his wife asked if she could give me a hug. You tend to think, “Can’t they just put pen to paper and say thank you?” I didn’t understand how hard that was.’

  The mother explained that she had often thought about writing to their donor’s family through the nurses but couldn’t find the words, because she was worried. ‘How can I tell them that their decision has given me my daughter back? It will rub salt into their wound.’

  Sue reacted strongly to that, telling her: ‘It won’t, you know. They made that decision at a time of tragedy that was going to happen anyway. They need to know some good has come out of it.’

  She was taken aback by her own strong reaction and thought about it all the way home. She had already replied to Linda’s letter but now decided to write via the transplant nurse to the other people who had been given organs from Martin, to say she was glad and proud he had been able to help them. ‘I wanted to say, “We miss Martin every day, but we’re glad we made the decision we did.” I didn’t expect to hear back.’

  There were no contact details, of course, and no clues that would allow people to trace her – but by an extraordinary coincidence, one of the people who got the note was actually writing to her at exactly the same time. The transplant nurses who are usually so cautious saw that the letters had crossed and put them directly in touch. That was unheard of, but it happened in this case. It was the beginning of an unexpected relationship that would endure. Surprisingly, it was not with either Linda or Marc …

  Twenty-Eight

  Andrew

  They call it Vampire’s disease. You can’t go out in direct sunlight or your skin blisters. You stick to the shadows or only dare to venture out at night. Your lips peel back and your gums may shrink, exposing the teeth so they look like fangs. Your skin is yellow, tightening on the skull with dark, sunken eyes. Your face may become disfigured and you could lose your ears or nose. You are not a monster, but the sight of men and women like you has struck fear into ignorant people throughout history, inspiring myths and legends about night-dwellers, bloodsuckers and vicious, demonic werewolves as well as the vampires who give the disease its horrible nickname.

  The real name is porphyria, from the ancient Greek word for purple, because the urine of those afflicted turns the colour of port wine. Instead of being given medical help, m
any have been driven from their homes over the centuries, disowned or even burned at the stake.

  Andrew Seery was lucky enough to be born at a time when doctors had identified this as a genetic condition caused by too many porphyrins, chemicals in the body that exist to help produce a vital part of red blood cells. On the other hand, his childhood was troubled. His father was an alcoholic and his mother had a breakdown, so when he was nine years old Andrew was taken into care, where he was teased mercilessly because of the way he looked. ‘I was always the boy that had scabs on his face from the burns, which were very painful. I always wore long sleeves and a hat and I used to always want to be in the shade. I would criss-cross the road to be out of the sun so it would take me much longer to get anywhere.’

  Shunned by the other kids, he was about to commit suicide by throwing himself into a river at the age of twelve when he felt someone close by. ‘An old man looked at me and shook his head. I was really scared because I knew I shouldn’t have been doing this, so I bottled it.’

  Instead of killing himself he started to pray and over time became a Christian, which he says helped him to survive. Andrew managed to cope with his condition enough to train as a hairdresser, fall in love, marry and have children; but as he grew older, the porphyria got much worse. ‘My tolerance to sunlight deteriorated in my late twenties, until being outside was really painful. There was no cure for it. I kept going, but that summer of 2003 I was cutting hair at one of my two salons in Basingstoke when I started getting pains in my side. The next day I was yellow.’

  The doctor said his liver was failing and asked how much he drank, but Andrew laughed. He barely drank at all. ‘That was a dark moment, because if it had been the drink you could just cut down, couldn’t you?’

  After three weeks of uncertainty, growing weaker, he was sent to the specialist unit at Addenbrooke’s Hospital in Cambridge for a bone marrow transplant, but when he got there they said he was too late. There was too much damage, his liver would not cope with the operation. By now, Andrew was close to death. ‘I was down to six stone four, in a wheelchair, being fed on a nasal drip and very, very weak.’

  They told him he needed a liver transplant but the waiting time was nine months. ‘I didn’t have nine months. They didn’t think I would last anywhere near that long. I knew then that someone would have to die if I was going to be saved. That was weird. If I saw an ambulance before this, I would say a prayer for the people in it. Now I was thinking, “That could be my chance to live.”’

  Andrew was only thirty-four years old. His daughter was eight and his son was ten. ‘When you have got children that age you become a little selfish. I prayed, “Lord, let me see them grow up.” You don’t wish anyone harm, but you have a great desire to live.’

  Andrew went home to Winchester and spent most days in bed. ‘If I got out of bed to make a cup of tea, that would be all I could do for the day, my energy would be gone. I was anxious, thinking each day was my last on the planet.’

  The telephone rang in the early hours of the Friday morning in late August – when Martin was in the operating theatre, although Andrew knew nothing of that – and his wife took the call. A liver was available, it was being collected now. She drove him to Addenbrooke’s as quickly as possible, which took nearly three hours as they had to get around the M25 and up the A1 in the early morning traffic. ‘I went straight into theatre,’ he says.

  The surgeon Paul Gibbs operated in the dark because of Andrew’s condition, working by ultraviolet light to take out his diseased liver and replace it with the healthy one from Martin. ‘We had UV filters on all the theatre lights and with screens on the windows blocking out all natural light, so the theatre was very strange,’ the doctor told a reporter afterwards. ‘We had lots of people come in and say, “What on earth’s going on in here?” because it was very dark apart from these pools of blue light around the anaesthetic area and the operation itself.’

  This was such an unusual case that the surgeon talked to the Guardian about it afterwards. ‘It’s a complex procedure, both surgically and physiologically for the patient and therefore for the anaesthetist. When you don’t have a liver you’re not making a lot of the normal proteins and performing a lot of the homeostatic mechanisms that are necessary for life. And, depending on how you do the liver transplant, you might also cut off part of the blood supply back to the heart, so you might need to put them on to bypass. The anaesthetist needs to support them during that procedure. In some cases, where there has been a lot of bleeding, it’s the anaesthetist who has a crucial role as much as the surgeon – it’s a real team event to get the patient through.’

  Mr Gibbs said he was in the darkened operating theatre for eight hours with his team. ‘You get the liver out, put the new liver in, plumb the blood vessels into it, you get reasonable blood clotting achieved, then you go off and have lunch and leave it for half an hour for the anaesthetist to stabilise the patient and also for the new liver to start working. That’s a useful period of time for the stabilisation of the patient as well as good for the surgical team to have a rest.’

  Despite the strange conditions, they were relaxed. ‘You don’t go into an operation thinking if I do this wrong, this patient will die, because if you did that all the time you wouldn’t be able to do it. You’re talking to the anaesthetists, or to the other surgeons, about what you did yesterday or what you are doing at the weekend. If it’s a difficult, concentratey bit, you concentrate and stop talking, and then you start talking again. It’s very relaxed and there’s lots of black humour.’

  Andrew had been told his liver was coming from a teenage boy, but there were no other details. ‘My first thought was, “Oh no!” I presumed it was a road accident, I didn’t know then that they had to keep him alive on a machine for a while for me and the others, that’s amazing.’ Andrew had other things to worry about, as his body rejected the liver. ‘I had loads of problems, including pneumonia. I’d go home for a week then have to go back. There was a problem at the point at which the liver was attached to me, the bile was going back up the pipe and it was all going wrong. A couple of weeks before Christmas they said I would have to have another transplant but I prayed about it and when I went back after Christmas the consultant said, “I don’t know what you’ve been doing or eating but you are fifty per cent better.”’

  His recovery began to speed up. ‘I was doing things I hadn’t done for years. I used to poke my head out of the window when it was sunny and think, “Wow, I can feel the sun on my skin.” It was great to be able to eat without stomach problems, too.’

  By now he had been told the name of the young man who had given him this liver and he was talking to it. ‘Mad, isn’t it? You’ve got to cope somehow. If things were difficult I would say, “Come on, Martin, we’ve got to get through this.” I still do talk to the liver, it does help, although if you think about it too much you could go over the top. There was one guy in hospital who totally flipped and tried to take his liver out, he was clawing at his body. I get a little wobble now and then, but I think, “It’s not Martin. His soul has gone.”’

  That didn’t stop him feeling survivor’s guilt. ‘You’re alive and someone else isn’t. When you believe that everybody is equal in the eyes of God and everyone has a right to life, it could probably bring you down, if you didn’t find a way to handle it.’

  His way of handling it was to try to get in touch with his donor’s family: ‘I would like to thank you in person.’ He knew that was against the rules, so why suggest it? ‘Writing a letter is not really good enough. You can’t say, “Thank you, I’m alive, your son’s dead.” It was important to me to meet them.’ The hospitals usually consider that unwise, but in this case Sue Burton had already written her letter to him and the transplant co-ordinator said she had been waiting for the right moment to pass it on: ‘That’s interesting, the mother has been asking about you, too.’

  They exchanged emails and Sue sent Andrew some thoughts about her son’s life an
d a photograph of Martin. ‘That was daunting. I looked on the computer and saw his face for the first time. It wasn’t a liver, it was a person. I’ve had this sense of living two lives. The fact he was so young inspired me to get the most out of the time he had given me. You’ve got to live up to the gift, be thankful instead of grumbling. Seeing the face and reading about the life that had been planned, it moved me. I did cry.’

  His wife Geraldine was in the room with him when the email came and she could feel his rush of sadness.

  ‘Are you okay?’

  ‘I’m not sure. Yeah. This makes it more real.’

  Andrew insists that his liver ached when he saw Martin. When he talks about it now, he reaches down to put a hand on his side. ‘I can feel extra activity in the liver area, right now.’

  Andrew is still skinny and sallow and he walks with a cane sometimes but he’s better than he could have hoped, presiding over a crew of hairdressers in his salons, looking like Captain Jack Sparrow squeezed into a three-piece suit and trilby. He’s a bit of a dandy with a silk square in his breast pocket, and as a lay preacher he likes to tell stories. ‘We had this Geordie chef on the ward. One day he served steak and kidney pie and liver and onions. I’m not kidding. I had to say, “Are you having a laugh? This is a transplant hospital!” Seriously. Can you believe it?’

  Andrew still has to have blood transfusions every week and they slow him down, but there’s no doubt that he’s loving his extra life. ‘I’m not great in the morning, I puke up sometimes and I’ve lost my teeth, but that’s cosmetic. I was never good-looking anyway. The liver has given me ten more years, now I’ve got to stay around to see the kids through university. My daughter wants me to walk her down the aisle someday, so no pressure! Children want your time, more than anything. They couldn’t give a monkeys about flash holidays or a big house, they remember the ordinary things that cost nothing.’