Infected Blood Inquiry: Boy, 7, was used in secret trials before HIV infection, parents say (2024)

Colin Smith carries a small suitcase into the dining room of their Newport home and lays it flat on the table in the centre of the room. He pops open both latches.

His wife Jan reaches inside and pulls out a sky blue child's blanket. She holds it close to her face, closes her eyes and inhales deeply.

"It still smells of him," she says, softly.

"This is the blanket he was wrapped in when he died."

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Their son, also called Colin, was just seven years old when he died in January 1990. His tiny body was ravaged by Hepatitis C and AIDS.

The suitcase, much like the one most families used to own in the 1980s, is just big enough to hold all the memories of their son's short life.

Next to the blanket are his favourite toys including a snow globe and lots of his artwork.

Infected Blood Inquiry: Boy, 7, was used in secret trials before HIV infection, parents say (1)

Jan explains that Colin loved to paint and draw and that he was very talented.

"He was 13 pounds when he died. That's nothing, is it, for a seven-year-old?" Jan asks.

The question goes unanswered as a momentary silence fills the room.

Colin was born with haemophilia. The treatment for his blood clotting disorder included a product called Factor VIII.

What his parents didn't know was that the Factor VIII was made in America using blood farmed from prisoners, drug addicts and sex workers.

Jan can recall all the fine details of that day clearly. Especially the cold, matter-of-fact way the bombshell news was delivered by doctors treating Colin.

"We went to the hospital and they called us out into a corridor, kids running around, parents, and just told us that Colin had become [infected with] HIV," Jan says.

By this time, their beautiful little boy had become very sick.

'You just couldn't pick him up'

Colin Sr is still haunted by the effect the virus had on his son's body. "You could see every sinew and tendon in his body," he says.

Jan says: "I think it was about '89 that we realised because the weight loss was incredible. And we had him home for a little while, and you couldn't just pick him up.

"We had to use a sheepskin because it hurt him. He would say: 'Mum you're hurting, it's hurting'."

Colin was treated by Professor Arthur Bloom, one of the country's leading haemophiliac specialists in the 1980s who died in 1992.

However, documents shown at the Infected Blood Inquiry prove Bloom's research carried great risks and these were never explained to Colin's parents.

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Infected Blood Inquiry: Boy, 7, was used in secret trials before HIV infection, parents say (3)

There is a record of the first time Colin went into hospital that shows that he had never been treated for his haemophilia at this point.

Previously untreated patients were known to be useful for research as their responses to new treatments could be tracked. Patients exactly like Colin.

Also shown to the Infected Blood Inquiry was a letter from Bloom to a colleague after another visit by Colin to hospital saying he'd been given Factor VIII and acknowledging that even though this was the British version there was still a risk of Hepatitis but that "this is just something haemophiliacs have to accept".

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And a letter, dated 24 June 1983, from Bloom to colleagues discusses the risk of AIDS. They accept that one possible case of AIDS has been reported.

Colin's parents are convinced their son was being used in secret trials.

Infected Blood Inquiry: Boy, 7, was used in secret trials before HIV infection, parents say (4)

"I think Colin was just unlucky enough to be born at the right time. Newly diagnosed haemophiliac, never been treated," his father explains.

"Which is what we were after because as documentation states they are cheaper than chimpanzees. You treat a chimp once, you can follow these children throughout their lives. And that's what was going on.

"And this was going on from the '70s. Colin was born in 1982. Yet they still infected him. How do you justify that?"

His mother says that they trusted the doctors at the time and never questioned their son's treatment. "When we think back, it was just blood tests. Blood tests, blood tests, blood tests."

Hate campaign

The threat of HIV and AIDs was only just emerging. And this ignorance drove a hate-fuelled campaign against all those impacted.

This stigma forced Colin and Jan to move home and be shunned by some of their own community. All while still caring for their dying son.

"It became public when he needed to start school for nursery and all the parents protested and said: 'We're not having an AIDS kid in this school', because we've been known as the AIDS family. We had AIDS... [written] on the house.

"It was like six-foot letters 'AIDS DEAD', we had crosses scraped into the door. The phone calls in the middle of the night were not very nice. They were the worst."

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As Colin's condition deteriorated, his parents decided to bring him home for what would be his last Christmas with the family. It was against the wishes of Bloom.

Jan and Colin were told haemophiliacs with AIDS should die in hospital and be cremated quickly. But the family ignored the hospital.

"And you know what," Jan says, "he asked for a bike. And we actually got him a bike. He never rode it, obviously because he was too ill. But he wanted a bike. And I'm not going to not get him a bike. Because they all have bikes. But Colin never, never even sat on one."

Infected Blood Inquiry: Boy, 7, was used in secret trials before HIV infection, parents say (5)

That difficult decision to remove Colin from hospital to spend his last days with his family at home proved to be the right one.

"He was on my lap and he just got up to you, didn't he?" Jan says looking at her husband. "He said: 'I can't see, daddy. I can't see'. And then he just lay back. My hand was on his chest.

"And, you know, for a mother to actually feel the rise and fall of his chest. Waiting for it to stop. Because that's what I was doing.

"I was waiting for it to stop. And then it stopped. And I just said: 'I think he's gone'. And I remember shaking him a little bit, but he'd gone."

Infected Blood Inquiry: Boy, 7, was used in secret trials before HIV infection, parents say (6)

'I want my son to have his name back'

Sir Brian Langstaff delivered the long-awaited report into the infected blood scandal on Monday.

It has taken campaigners like Jan and Colin decades to achieve this. They are clear on what this report must say and how the government must respond.

Colin Sr lives with the guilt of not protecting his son. He wants accountability.

"I want justice to be served properly not hypothetically," he says. "Let's see the people who did this - hopefully criminal charges. It is manslaughter at least. I gave my son over to his killers, you know, and I can't get to grips with that."

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Infected Blood Inquiry: Boy, 7, was used in secret trials before HIV infection, parents say (7) 6:20

For Jan, it will be recognition for a lifetime of heartbreak and grieving.

"I want people to recognise my son. And I want to be able to go to the cemetery and say we've done it. And you've done it. That's what I want. And I want an apology.

"People say it's the money, it's not the money. And I can't get that through to people. It's not the money. I want recognition.

"I want my son to have his name back. His name is Colin John Smith. And that's what I want people to remember."

Infected Blood Inquiry: Boy, 7, was used in secret trials before HIV infection, parents say (2024)

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