Potts was a stopgap. It wasn’t a cure, but I don’t know how long he would have lived without it. David went down to the operating theatre wearing his favourite knitted hand puppet, which he called ‘rag puppet’, to keep him company. The operation took all day. I remember us sitting watching TV that evening – Mum and Dad chain-smoking, waiting for the call from the hospital. Then the phone rang. They said he was out of theatre and doing well. I can remember both of my parents crying with relief. When they came back from the hospital they told us that David still had the little knitted puppet on his hand, so we knew he was okay.
The effect of the surgery was immediate, and felt miraculous:
I’ll never forget it. He was just a completely different colour – his hands, particularly the tips and nails, had always been purple, like the colour of a varicose vein. But I can remember turning his hands over in mine and saying, ‘Mummy! He’s got pink fingers!’ It was like he’d been mended. He looked like a sort of angel version of himself.
The respite would prove to be all too brief:
For a little while he was more mobile. He could walk as far as the top of the road with the dog. He could get up the stairs at bedtime. But by the time he was ten his abilities had faded. My brother Johnny used to have to carry him up to bed on his back.
David went onto the waiting list for further surgery – this time to tackle the underlying problem of Fallot’s Tetralogy. The waiting took forever, and as each year passed David’s heart grew more damaged. The family were desperate – and when they witnessed younger children being treated ahead of David their desperation turned to frustration:
He’d be admitted to the hospital ward for monitoring, and I remember my mum saying, ‘That child over there in that bed wasn’t even born when David went on the waiting list, and he’s just been treated!’
When the date for David’s operation finally came through, there was a genuine feeling of optimism – a bright new start. On the night before the operation the family gathered around David’s bed in the hospital, laughing and joking. Heidi was happy to leave him there and return home.
But later that night, tears began to roll down Heidi’s face.
I suddenly thought, ‘I’m never going to see David alive again.’ I just knew. Maybe deep down I’d been suppressing the knowledge that this was a very risky surgery. Maybe deep down I knew that.
The next day, the family went to the hospital to wait for David to return from surgery, but Heidi didn’t go with them. Instead, she spent the day painting a small boxroom that she used for her writing. She needed something to occupy her. She glanced at the clock repeatedly as the hours ticked by:
He went down to surgery early in the morning. We were told it would be about eight hours. They’d all gone to the hospital after lunch, as he was due out around two. Then I saw their car pull up outside. They seemed early. I came down and I said, ‘How is he?’ Johnny said, ‘He didn’t make it.’
The open-heart surgery had required David’s heart to be temporarily stopped in order to perform the necessary repairs. Yet once the surgery was complete, the surgeons weren’t able to restart it. It had deteriorated so much over the years of waiting that it couldn’t be persuaded to beat again. My brother-in-law died on the operating table.
His shellshocked family returned home. They continued to receive ‘good luck’ calls, and ‘how-is-he’ visits, and ‘get-well-soon’ messages from David’s friends, teachers and neighbours. Each time they had to relay the simple, terrible news to fresh tears. David was gone.
The next days were overtaken by a new urgency. David had died on the Tuesday before Easter. They wanted him back home for burial before the long Easter break, or else he’d be alone in the morgue all that time. He belonged with his family. Yet there was a frustrating two-day delay in getting the documents from the hospital necessary to release his body, leaving them with a desperate dash on Thursday afternoon to get the death certificate so that the undertakers could collect him.
It was only years later that they learned what had happened to David and his heart in that unexplained two-day delay.
The burial took place the next week. Heidi’s mum wanted David buried in his own clothes, so she and Heidi picked out some of his favourite things to wear. It turned out to be a positive experience for them both:
There was a pair of cords he looked nice in, and he had new slippers for the hospital that he’d been particularly delighted with, so we buried him with those. There was also a He-Man action figure that he loved, so that went in too. After that we felt better about things. We’d got him back. We were looking after him again, even though he was dead.
The funeral service was moving and very well attended. David had touched a lot of lives in the parish. Yet the burial was harrowing. It poured with rain at the graveside. The family were all soaked to the skin.
They didn’t have a large gathering afterwards. In the evening, the family went for a sombre meal in one of David’s favourite restaurants. They reminisced quietly about the son and brother they’d lost. They tried to make sense of what David had meant to them all:
We weren’t really physically demonstrative with each other as a family. We weren’t very ‘huggy-kissy’. But the thing is, everybody hugged and kissed David. We all told him we loved him. David was a touchstone for our family, a nodal point for our collective love. When we lost David we lost so much more than a person – we lost our means of communicating with each other. People talk about a child like David having ‘special needs’. But David was himself special; he fulfilled our special needs.
David had been her family’s sacred heart. The rhythmic beat of a demonstrative love pumped through the arteries of their world. He’d replenished and sustained the best parts of them. And now his sacred heart had been taken from them.
In more ways than they knew.
*
January 2000. It’s my tenth year of marriage to Heidi, and we have a four-year-old son. Reports about the Alder Hey organs scandal have been peppering the television news for months. It’s shocking stuff. The organs of dead children had been removed from their bodies without the knowledge or consent of their families for the purposes of private medical research. The practice had been particularly widespread in Liverpool, where it was discovered that Alder Hey Children’s Hospital had illegally retained and stored 2,080 children’s hearts, 800 other organs and 400 human foetuses over many years. A pathologist called Dick van Velzen had authorised the harvesting of children’s body parts on an industrial scale. Organs were kept in a crowded basement. The body parts were inadequately documented and badly preserved. The practice had become routine procedure – long established, and increasingly estranged from any ethics, family dignity or legal rights.
Being from Liverpool, we felt a particular empathy with the families. Yet David had never been treated at Alder Hey hospital, so we didn’t feel directly involved.
Heidi recalls the night that changed:
One night it was announced on the news that children who’d been treated for heart problems at David’s hospital were also affected. It gave a number you could ring to make enquiries. I rang the number straight away. The lady on the phone was kind, but businesslike – clearly well trained. I gave her David’s dates and details and she said she’d be in touch. But we heard nothing at all, and after months went by the matter drifted from our minds. We assumed that everything must be all right.
We assumed wrong. After almost a year, the telephone rang:
I was in our kitchen standing by the cooker, chopping something. I picked it up. ‘Is that Heidi Thomas?’ It was Alder Hey. ‘We’ve been trying to get hold of you. It does appear that your brother was involved in the organ scandal. We’ve found his heart.’
I remember the rush of blood to my head. The lady said, ‘We can assure you it’s been kept in very respectful circumstances. It had its own jar.’
The hospital had stolen David’s heart after his surgery to use as a research specimen. They�
��d conducted an unauthorised postmortem on him in that two-day gap when the family had been waiting to bring his body home. They’d taken David’s heart without asking, or providing any information. We found out later that, relatively speaking, David’s heart had, indeed, been well kept. Van Velzen had harvested organs so haphazardly that many were stored in appalling conditions – piled in buckets and badly documented. Yet David’s heart was logged and exhibited as a prime example of Fallot’s Tetralogy, and so had been successfully traced.
The next ordeal for Heidi was how to tell her mother. She’d come to babysit for us one evening when Heidi broke the news. It was an agonising scene:
My mum just ran out of the room. As though the news was an animal from which she had to escape. When she could finally speak, her anguish spoke for all of us. ‘It was the first time I’d ever let him out of my sight,’ she said.
In spite of these events, the hospital then asked if David’s heart might be retained by them for medical research. The family, perhaps not surprisingly, weren’t inclined to turn a medical theft into a donation. They requested the immediate return of David’s heart for burial. Later that month, two women arrived at my motherin-law’s home in Liverpool to complete the necessary formalities – a legal administrator and a counsellor. Heidi sat with her mother in support:
They brought out a sheaf of legal papers an inch thick – so many documents. They told us we’d have to sign two forms so David’s heart could be released. My mother’s face was like thunder. She told them: ‘You didn’t ask me to sign when you took his heart away. So why should I sign to get it back? His heart is mine. It was always mine!’ She wouldn’t sign. The women were respectful. Kind. I knew that the only way we’d get his heart back was to sign those forms, so I offered to do it. In the end I think Mum and me signed one each.
Alder Hey paid for the funeral and the casket: a small polished pine box about a foot square. David’s grave was reopened. The box arrived in its own hearse – it was so small that the undertaker carried it on his knees. Heidi’s brother John carried it from the car in his arms. The graveside ceremony was short and intimate:
It was a winter’s day. And the thing I remember most is that as the box went into the ground the sun came out, bursting through the clouds. When we’d buried him it had poured with rain. And now the sun had come out.
Tears well up in my wife’s eyes as she remembers:
It felt as though it was finally completed. That first time – that terrible rain – he wasn’t complete. Because we didn’t know his whole story. We didn’t know what had happened to him. You can’t bury the whole person if you don’t know their story.
Afterwards, the Alder Hey Trust offered every family a settlement of five thousand pounds. My family took the payment, and the matter was finally closed. Heidi’s mum gave Heidi a portion of the money and told her to buy something to remember David by. Heidi bought an exquisite pair of candlesticks – delicate silver stems that now have pride of place in our home.
Every Christmas Day Heidi places a ribbon on the stems and a fresh candle in each. She places them at the heart of our table as the family gathers to celebrate. Heidi calls them ‘David’s candlesticks’:
When I put them on the table now, I never think, ‘Those are the Alder Hey candlesticks.’ They’re David’s candlesticks. The crime of Alder Hey was to not perceive a child as part of a family. Most of the children whose organs were harvested had been ill or disabled all their lives. Because of that they were exceptionally well loved and protected by the siblings and parents that cared for them. Those families were going to feel that child’s loss incredibly keenly – and if you ransack the child’s body without consent you don’t just cause pain, you deny that family a considerable gift in their hour of bereavement: the choice to give something of the love they felt. That would have helped so much in healing, and I expect it would have been more helpful to medical science than organs spilling out of buckets onto a laboratory floor. Now when I look at those candlesticks, Alder Hey doesn’t enter my mind. We’ve taken repossession of him. Now his life speaks as loudly as it ever did – but of the things that mattered when he was alive. Love. Light. Family. That’s our victory.
The scandal of Alder Hey was one of consent, not idle sentiment. My family, like many others, are lovers of medicine and keen organ donors. If asked, we would likely have allowed David’s heart to be used to help others. But our consent was not considered relevant. David’s failing organ wasn’t seen as belonging to him or his family any more, despite years of heroic nurture. Someone felt sufficiently entitled to take David’s heart without asking. This attitude was a self-inflicted wound dealt to medicine by its own narrow assumptions, and not by the emotions of its victims.
A ‘greater good’ without the free consent of all parties is neither great nor good.
The lessons of Alder Hey are central to the credibility and survival of public medicine in our society. Public health is nothing if it can’t speak directly to the hearts of the humans it serves. To do this it must understand the true nature and rhythm of human care beyond a heart’s narrow function. A family’s heart is about more than physiology, blood, or the sum of chromosomes. It’s more than the things assigned by genetics or accidents of biology.
It’s what we choose that makes us who we are, and the people we choose to love that governs the health of the hearts assigned to us.
7
NECROSIS
Necrosis n.
1. The death of cell tissue due to disease, injury, or failure of blood supply.
2. From the Greek νέκρωσις, meaning the state of death, or the act of dying.
MEDICINE
You will die.
That’s the beautiful, terrible, simple truth of it. A biological fact, a medical reality and a genealogical axiom. You can walk around it, rationalise it in faith or medicate against it, but it won’t change the ultimate outcome. Implicit in the fact of your existence is the inevitability of your extinction.
You will die. Maybe soon. Maybe not for many years. But you will.
It’s little wonder that this fact holds our species in such a metaphysical grip. If malady is the antagonist that drives the heroes of a family through the chapters of their story, then death is the implacable judge that subjects all of our life’s actions and choices to the summary verdict of others. In the end, our free will is as worthless to us as our possessions. The capacity to tell our own story ceases. We become the narrative property of those who follow.
In medicine and science there are many different kinds of death, and many dimensions to it – from the microscopic expiry of an organism’s cells to the mass extinction of a species. Death in nature is a process as well as a tragedy. It’s intimately bound to the life it extinguishes, and the change it induces can be productive as well as painful.
At the cellular level, death has a natural role to play in the functioning of the wider system. Apoptosis is the name given to a naturally occurring process of programmed cell death in our bodies. Sometimes our cells need to die for the greater good. It might be that they’ve become damaged, infected by a virus, or their destruction is required to make way for new growth or development. In these cases an orderly death of the cell takes place. Proteins and enzymes break down the cell components, and then specialist roving phagocyte cells move in to mop up and remove the debris. This leaves adjacent cells healthy and unaffected. Menstruation in women involves cell apoptosis, as does the development of separate fingers and toes in foetal growth. Constructive death plays a part in the very stuff of human life.
That said, some kinds of natural death feel anything but constructive. Early-stage foetal death, commonly known as miscarriage, is one such example. The chance of losing a baby after less than twenty weeks’ gestation is reasonably high – about one in ten for women under forty. The body can spontaneously abort a foetus if there are problems with its development and genetic abnormalities are evident in more than half of the foetuses miscarrie
d in the first thirteen weeks. As with apoptosis at the cellular level, a foetal death may serve a greater biological good, yet it can bring a lasting emotional cost to those who suffer it.
One kind of biological death can be very costly indeed. Necrosis – the unnatural death of living cells – occurs in the human body when an external agent causes a cell to decompose and die prematurely. This might be due to bodily infection, a venomous poison or an injury like frostbite. The affected cell swells and bursts, and its contents are dispersed. This disorderly destruction of the cell, and the subsequent response produced by our immune system, prevents the phagocyte cells from mopping up the cell debris in a controlled way, as happens with apoptosis. Material released by the destroyed cell can then damage nearby healthy cells, spreading necrosis and placing the whole of the human organism at risk. A well-known example of necrosis in human tissue is gangrene.
Gangrenous necrosis develops when the blood supply to tissues is blocked – often in the body’s visible extremities – depriving those cells of the oxygen and nutrients they need to survive. This can happen through poor circulation, or due to medical conditions like diabetes or high blood pressure. It can also be induced by severe cold or damage to our blood supply through injury or surgery. The most common kinds are dry gangrene and wet gangrene. Dry gangrene, though serious, rarely results in human death because the damage is localised, non-infectious, and slower to spread. Removal of the dead tissue at the affected extremity will normally lead to full recovery. Wet gangrene is more dangerous. In this case, the gangrene becomes bacterially infected or ‘wet’ – so-called because of the stinking pus that quickly builds in the affected area. This can lead to sepsis, and if the gangrene and infection isn’t treated and removed immediately the patient may die.
But perhaps the most fearsome necrosis of all is one that hides itself from sight. Gangrene of the skin on fingers and toes has a ghoulish but helpful appearance. Blackened flesh is easy to notice and diagnose. But what if the gangrene is hidden deep inside our bodies? What if an essential part of our functioning system suddenly suffers a loss of blood and begins to die inside of us? Would we know what was happening? Would medics be able to diagnose the problem in time, and excise the essential tissue before the infected gangrene ate our life away?
Flesh and Blood Page 22
