The parents of a young Aids victim have spoken about the abuse the family faced, at a public inquiry into the contaminated blood scandal.
Colin Smith, a haemophiliac, died at the age of seven in 1990 after being given infected blood products.
Parents Colin and Janet were told in the hospital corridor he had been infected with HIV, when he was two.
They later suffered a lot of abuse, including graffiti being written on the side of their house.
Their consultant, the late Prof Arthur Bloom, heard they were upset after they were given the news about their youngest son and saw them in a private room.
“But the damage had been done,” said Mrs Smith. “He told us in the corridor.”
Mr Smith, from Newport, added: “He says ‘HIV, he’s one of the unlucky few’ – we assumed there were one of two cases but as it turns out, there’s thousands.”
Mrs Smith said the Aids awareness TV advertising campaign at the time also had a “devastating” impact and then news got out locally.
“We started getting ‘Aids – dead’ written on the house, not little letters, 6ft-high letters on the side of the house, crosses on the door, car vandalised.
“People going across the street from us, threatening to take their children out of school if Colin went there, it was devastating.”
Mr Smith said there were constant phone calls “day and night”. He lost his job after the diagnosis because his boss was scared he’d lose customers.
He was seen as “unemployable”, while their children – Colin was the youngest of four – were known as the “Aids kids” at school and had abuse themselves.
“We were known locally as ‘the Aids family’ for a long time,” said Mrs Smith.
She said Colin’s friends at school were “beautiful” and the teachers were supportive but parents were a problem.
Hearings are being held in Cardiff this week as part of an investigation into the UK-wide contaminated blood scandal.
At least 300 victims from Wales were left with chronic or life-limiting conditions such as hepatitis or HIV after receiving contaminated blood products in the 1970s and 80s.
The Smiths told the inquiry: “We need justice” and they are still “angry” about events which led to his death.
They believe he was used as part of a trial of blood products without their consent.
The inquiry heard Prof Bloom, a consultant haematologist at University Hospital of Wales in Cardiff and one the leading experts in the UK, had written that hepatitis infection was a risk for haemophiliacs, but this had never been communicated to the Smiths.
Mrs Smith said: “We just believed the doctors. He was like a god to us, Prof Bloom.”
In their statement to the inquiry they said they believed he had been deliberately targeted to test blood products.
His parents said Colin loved life, was brave and never complained but they believed he knew he was going to die.
His mother said once after a row with his brother he said ‘you’re going to miss me when I’m gone, you can have all my toys’.
Mrs Smith added: “We want people to make sure people know it was children taken away. It took lives, maimed people, crippled with such horrible things. We need justice. We need something done about this. It’s just so wrong and I get really angry about it. We feel maybe we’re getting somewhere for the first time in all these years.”
Former high court judge, Sir Brian Langstaff, and his inquiry aim to get to the bottom of what went wrong.
He has already heard evidence in England, Scotland and Northern Ireland.
A blood donor told the inquiry how she continued to give blood twice a year for six years – unaware she had been given hepatitis C after an infected blood transfusion in 1986.
Elaine Huxley said she had wanted to “give something back” but was now concerned her blood “could have infected babies and children who hadn’t had a chance in life”.
There are no hospital records of her care after the transfusion, following a hysterectomy, because they had been destroyed.
Ms Huxley said: “I can’t believe I’m here today giving testimony against my government for infecting me with dirty blood.”
Sir Brian told her after her evidence: “It’s not your fault that you gave blood that might have been contaminated so don’t think that it is.”
‘I want to know some answers’
Cardiff teacher Christopher Thomas had mild haemophilia although at 21 he had his left leg amputated after complications following a broken bone.
His wife Judith said despite this he was energetic and “lived life to the full”, enjoying water sports and becoming a sailing instructor. He also did practical work on properties the couple had bought, including up on the roof.
He was treated by Prof Bloom and later by a consultant in Bangor, Gwynedd when the couple moved to live on the Llŷn Peninsula.
In 1983, he took early retirement because he was suffering from bleeds into his ankle. A year later he took a HIV test and he was told he was positive, which left him “distraught”.
“Of course, we were devastated and we got advice on how to cope with the condition,” she said. “I thought he was going to die, I was going to die – and the kids.”
Mrs Thomas, who was a physiotherapist, was then tested and was negative.
There is no note recording Christopher’s first positive test or his diagnosis in his medical records, which the family solicitor obtained.
In 1987, he started HIV treatment but was starting to get symptoms and had lost some weight and was tired. Christopher’s condition then deteriorated from 1988 onwards and he needed a wheelchair and gave up sailing and driving.
He died in September 1990, aged 46.
“He’s missed out on my fantastic grandchildren – I’ve got five. It’s 30 years ago but it still hits home when you talk about it.”
Mrs Thomas added: “I want to know some answers – when Prof Bloom, but also the Department of Health and government ministers and pharmaceutical companies… when they knew about blood risks, and if they took immediate action and if they didn’t, why they didn’t.”
At the end of her evidence, Ms Thomas said she wanted to help “prevent this harrowing tragedy from being allowed to happen again”.
She added: “We’ll never really know how different all of our lives would be if our loved one had not been infected with contaminated blood.”
‘The stigma was terrible’
A severe haemophiliac, who was infected with HIV and hepatitis C, said he was considered a “lethal weapon” and thought about suicide after his diagnosis.
The man, who gave evidence anonymously, had been treated by Prof Bloom from 1977.
He was tested for HIV – without his knowledge – and told at the age of 19 he had contracted the virus.
But the man said Prof Bloom demanded secrecy from him.
“He told me not to say nothing to nobody. I said I would like to phone my mother now and he said ‘I would rather you didn’t’.
“I was devastated. The stigma was terrible. With the disease you felt dirty. The adverts on TV degrade you.”
He did tell his mother, but otherwise kept his diagnosis secret.
However, he explained he had an incident with police that made him feel “inhuman” – with the police being told he was “classed as a lethal weapon”.
“I had been in hospital watching people die because of this disease,” he added. “I felt gutless because I didn’t want to die that way. I’d seen grown men turn to nothing.”
He was later diagnosed with hepatitis C – which he is now clear of – but said the stigma against HIV was “still there”.