MURDERED BY THE STATE
Colin died of Aids at seven after being given blood the authorities knew could be infected. But as his parents reveal, the crushing injustices they’ve suffered don’t end there . . .
Colin and Janet Smith are sitting at opposite ends of the sofa, just as they were 27 years ago when they cradled their seven-yearold son as he died. They both look into the space between them as they recall how little room Colin Jnr took up. So vivid is their account that it could have happened yesterday.
‘There was nothing to him,’ says his dad. ‘no flesh left. He weighed less than a stone. We were just sitting with him. He was wrapped in sheepskin because we couldn’t touch him — it hurt him too much. i kept talking to him, talking nonsense, really. He was still with us.
‘We’d never talked to him about the fact he was dying, but i think he knew. He had said to his brothers: “You will miss me when i’m gone.” He was lying there and then suddenly he said, “i can’t see, Daddy”, and not long after that he slipped away.’
Janet nods. ‘We must have sat there for an hour and a half after that, in the quiet. i couldn’t bear to let them take him.’
The contrast between their tenderness when they talk of their boy, and their rage over the manner of his death on January 13, 1990, as he developed full-blown Aids, is striking.
Colin Snr reaches under the sofa and pulls out a bag overflowing with papers. Medical notes. Jargon that they didn’t understand then, but do now. He stabs at the pages, and three decades of frustration comes pouring out.
‘We wanted the word “MURDERED” on Colin’s gravestone, but the engravers said that wasn’t allowed,’ he says.
‘But our boy was murdered — and it was State-sanctioned. They knew. We think he was infected with Aids in an nHS hospital very early, before his immune system even had a chance to develop much.’
THEIR youngest, the child who defied the odds in even existing (‘He wasn’t planned. i’d had a vasectomy. When i got the final test to say it had worked, we discovered Janet was five months pregnant. He was our little bonus’), had been ill for most of his short life.
As a baby, Colin, one of the couple’s four sons, had been diagnosed with haemophilia, a genetic disease where blood doesn’t clot properly.
it should never have killed him, however, but he died in 1990 after contracting HiV and Hepatitis C from a contaminated dose of blood clotting protein Factor Viii, which had come from a U.S. prison.
At the time, the U.S. authorities had refused to use the blood, aware that it was unsafe. The Smiths — and more than 2,000 families like them — now know the British authorities had also been told the blood was contaminated.
For 27 years, the family have probed, campaigned and driven themselves nearly mad to discover the truth. The stress was near intolerable. Colin says they came close to parting because of it.
‘it’s the anger that gets you. it’s a father’s job to protect his s son, isn’t it? And i couldn’t.
‘Janet would sit in her rocking g chair and rock and i’d go to o Colin’s grave and shout at him. m. Why did he not fight more? We e nearly split up over it.’
last week, there was a breakkthrough when Prime Minister er Theresa May unexpectedly y announced an inquiry into the he scandal, potentially one of the biggest in the nHS, which the Mail has been campaigning about for 30 years.
There is quiet satisfaction in this modest family home in newport, South Wales, but no triumphalism. ‘About bloody time,’ says Colin. ‘our son was given a death sentence. So were thousands of others.
‘The families have known about this for decades and the authorities have covered it up. For years they’ve lied and stalled an and tried to get us to go away.’ n now he wants someone to pa pay — not necessarily in m monetary terms. ‘ i’m not int interested in compensation,’ he says. ‘ This isn’t about th that. i’d prefer someone to go to prison.’ F For almost three decades th this extraordinary couple hav have tried to do their best for their son in death, just as they did in life. Colin was blond, cheeky, wise beyond his years. His face smiles down from every wall, his drawings have been framed, his toys are treasured in a special trunk. ‘He wasn’t even supposed to be called Colin,’ laughs Colin Snr as he relates how they had agreed he should be called Matthew.
‘But i went to register the birth and decided he didn’t look like a Matthew. So i gave him my name.’
Janet throws him a look. ‘And i went beserk,’ she confirms.
With hindsight, the signs that Colin had haemophilia — a condition from which a cousin also suffered — were there from the start.
He was always ‘ a mass of bruises’, but they put this down to him being the baby in a family of boisterous boys. When he was
a toddler, the family were actually reported to Social Services by a stranger who saw Colin in a park and drew the wrong conclusion.
Not long afterwards, he was diagnosed with the condition which would turn their local hospital into a second home as blood transfusions were the stock treatment for the condition.
Any time Colin had a bleed — even from the tiniest knock — they would have to attend hospital. ‘Sometimes we were there twice a day,’ says Colin.
At the time, the plentiful supplies of blood were a godsend, thanks to a wonder treatment called Factor VIII. The NHS in England and Wales relied on it to help people who needed regular transfusions.
It was made in huge vats, from the blood plasma of thousands of people. But there was a problem — if just one donation was infected with a virus, it could contaminate the whole batch. And it did.
‘They got blood from prisoners in America, drug addicts and the like,’ says Janet. ‘Of course, we didn’t know then about Aids. We were so ignorant.’
But the authorities were not. We now know that in June 1983, eight weeks before Colin was first treated, a letter went out to haemophilia centres recommending children should not be treated with Factor VIII.
Had the guidelines been followed, Colin should still be alive today. They weren’t. He was given his initial dose shortly before his first birthday.
By the time Colin was two, his parents were being told he had tested positive for HIV. The questions just keep coming. ‘Did they know it was inevitable he’d get it?’ asks his father. ‘They kept testing his blood, which we could never understand.
‘They said they were checking his white blood cells, now we’re convinced they were checking for HIV and Hep C. But what else did he have? CJD? Now we want to know who knew what, when.
‘The first warnings about this were made before our son was born. How dare they have played Russian roulette with his life?’
THE
news that Colin had contracted the HIV virus, aged just two, was broken to his stunned parents brutally in the hospital corridor.
‘We came away not knowing what it meant. The consultant said something weird about the next five years being vital, and we didn’t understand.’
They realise now that the doctor meant Colin had five years left to live. ‘Which was spot-on, actually, since he died when he was seven. But we had no help after that.
‘They pretty much said, “Go home and enjoy him”. I mean, they must have known what they were dealing with.
‘Whenever Colin had a bleed after that they’d never be concerned about him, but about Daniel, his brother, who shared his room. I remember them telling me “burn the mattress”. Not once did they say why.’
The family were not told — until three years after Colin’s death — that he had also contracted Hepatitis C, another potentially dangerous condition.
‘They put us all at risk,’ says Janet. ‘ That can be passed on with open wounds. I remember doing this when Colin had a little cut (she licks her finger and rubs it gently on her arm). We could have infected the whole family. They never told us.’
What a lonely place this pair must have been in. To lose a child is always devastating, but to lose a child to Aids during the Eighties, when the disease turned sufferers and their families into social pariahs, was something else entirely.
‘ It was the time of all the doom-laden adverts about the condition,’ says Janet. ‘Everyone was scared. We got the brunt of it. We became known as the Aids family.’
In the early hours one morning, they heard a noise and rose to discover someone had daubed ‘Aids’ in giant letters across their home.
‘I was out at 2am painting over it,’ Colin recalls. ‘The kids wanted to know what I was doing painting the house at 2am and I said: “Oh, you know what your mother is like, she is always going on at me to spruce things up, so I might as well do it now.” ’
The family — struggling to cope with the round- the- clock demands of caring for the weakening Colin — were targeted in the cruellest of ways.
‘We’d get phone calls, usually in the small hours, from people calling us scum. They’d say: “Do your sons sleep together?” They’d call us disgusting.’ Mostly, the couple managed to protect their children from what was going on, but not always.
‘My son Patrick got a hard time of it once when all the kids at school surrounded him. They all gathered round and he was in the middle and they were chanting: “Aids, Aids. You are gay.”
‘We lost friends. People stopped coming round. They were afraid of Colin, afraid they would catch it. No matter how many times you explained, people still didn’t get it.’
Even relatives stayed away. ‘If our own family couldn’t deal with it, how could we expect the wider community to?’
Is Colin Snr bitter? Of course he is. ‘When he died we didn’t have an open coffin because I couldn’t bear all these people coming to see him when he was dead, when they wouldn’t come near him when he was alive.’
Salvation, for them, came in the form of contact with other families in the same position. They now have the support of a vast network of fellow sufferers.
The scale of this scandal is mind-blowing.
‘We know so many people who have died,’ says Colin. ‘Wives whose husbands infected them. People who lost their homes. And cases are still coming to light.’
The most pitiful part of the Smiths’ story is that they so obviously feel they have failed their son, when they did anything but. They gave him everything.
‘ He got a bike for his last Christmas, even though he was too ill to get on it,’ says Janet. ‘Whatever Colin wanted, Colin got. Near the end he decided he wanted to go to Blackpool to see the lights.
‘We took him in the car, in the middle of the night. It was November. Freezing! But we laid him on the back seat and he looked up through the sunroof.’
HE
IS still very much a part of this family. Janet still buys Colin a birthday present every year, usually a toy car (‘I know he’d be 34 now, but he’ll always be seven to me’), their four grandchildren know all about Uncle Colin, and his parents still visit his grave twice a week.
Truth be told, Janet is now glad that they didn’t have ‘MURDERED’ emblazoned on that headstone.
Instead, they went for an inscription that says: ‘ Miss you always, sweetheart.’
One can only hope, for their sakes, that the Smiths — and all families like them — get the answers they need soon. They have suffered enough.