Selected Transcripts of the Archer Independent Inquiry
Thursday, 24th May 2007
EVIDENCE OF JANET SMITH AND MR SMITH
LORD ARCHER OF SANDWELL: Thank you for coming. Were you here his morning?
JANET SMITH: We got here about 11.30.
LORD ARCHER OF SANDWELL: Either people may prefer to read from their statement or they may prefer to answer questions from me. What would you prefer?
JANET SMITH: Read, but if you need to stop me to ask any questions -
LORD ARCHER OF SANDWELL: Right, if you would care to read your statement.
JANET SMITH: Our fourth son Colin John Smith was born on 23rd August 1982. All seemed well until a few months later when he woke up with a bruise on his knee. My sister, who was staying with us at the time, said he had haemophilia. She knew what the bruise looked like as she has a haemophiliac son herself. Colin was then diagnosed with haemophilia at ten months old. So began the regular trips to the hospital for Factor VIII which was going very well, then he went into hospital for a routine operation to have grommets inserted into his ears. He was then two years old. He had Factor VIII 12 hours before the operation -- he had Factor VIII 12 hours later, which was -- from his medical records was old stock. It had been there for about two years. And it was also obviously a different batch number. Then they, after 12 hours later, they went back to the original Factor VIII, which they knew children – the contaminated Factor VIII which they knew that children under the age of four should always have stayed on the pure treatment. Within a few weeks, according to his medical records, Colin became ill. Routine blood tests confirmed that Colin had HIV. He was two. We never received any information or counselling but were told to go home and not to worry about it. It was not until Colin had a severe nose bleed in the night that we were told that we had to burn his mattress. Colin then --
LORD ARCHER OF SANDWELL: Who told you that? A doctor or someone?
JANET SMITH: Yes, we phoned the hospital. Colin always slept with his brother which, you know, kids do, and they were more concerned about his brother because he was caked in blood in his mouth, told us to leave Colin alone, to clean Daniel up and then to burn his mattress. It was not until Colin then began to get -- but that night we started to ask questions. We asked the hospital: why do we have to burn his mattress? But they just said that they were in the dark as much as we were. Colin then began to get severe chest infections, high temperatures and severe diarrhoea. He never really gained up from that. He was in hospital for about four months with a drip up his nose to feed him but as soon as it went in it came out the other end and he died on 13th January 1990. He was seven, and he weighed 13 pounds. But he died at home with people who loved him, and we had him for a wonderful 5 hours after his death. He left home and then he left home for the last time. We were so heart broken words cannot describe how we felt.
The following day his brothers came home as they had been staying with relatives because we didn't know what sort of death Colin was going to have. I didn't know if he was going to bleed. I was scared myself, and I certainly didn't want to let three children experience that but he did die very peacefully. So the following day his brothers came home. When we told them that Colin had gone to heaven it was the hardest thing we have ever had to do, and their howling actually filled the house, and that went on for days. We tried to carry on for the sake of the children. We did our grieving when the boys were in bed but how on earth do you comfort three heart broken boys when we were heart broken too? Then we tried to get on with our life and then around three years later we had a letter in the post asking us all to go to the hospital to be tested for hepatitis C, which --
LORD ARCHER OF SANDWELL: Was that the first time you had --
JANET SMITH: That was the first time we ever knew he had hepatitis C. And this was such a shock that it was the first time it was mentioned to us. When we got to the hospital I actually asked when Colin was infected. The doctor just shrugged his shoulders and said it could have been his first treatment. I then asked what had actually killed him -- was it AIDS or hepatitis C? And he just looked at me and said it could have been any one of them and then we were asked to leave. So why were we not even told that Colin had hepatitis C? Because we went home absolutely dumbfounded, because it was never discussed, we never had counselling, that was the first we ever heard that he had hepatitis C. I can't -- we can't understand that because of the risk to the other children, you know? They shared a room. I mean they had bunk beds but little children are little children. As soon as you leave the room they were in together but we were never told we were never told how to reduce any risks, or because it was – we just never ever even knew he had it.
MS WILLETT: Was the rest of the family tested for HIV?
JANET SMITH: No. We never had anything. We never – we were just told to go home and get on with it.
MS WILLETT: You weren't given any advice?
JANET SMITH: No, nothing at all.
MR SMITH: At the time they said they were as much in the dark as we were.
JANET SMITH: All they told us was when we gave Colin treatment to wear gloves. That was it.
MS WILLETT: But they knew enough to be concerned about his brother and to burn the mattress?
JANET SMITH: Exactly. But that was the first we --
LORD ARCHER OF SANDWELL: Did they ever mention the possibility of infected blood in general terms?
JANET SMITH: No, never. Never at all. Anyway, we were all tested anyway. Thankfully we were all negative. But we could not change anything, you know. I mean Colin had seven wonderful years with us. I never regret having that and he was a charming little boy. And then 17 years have passed, and I don't -- a dear friend of ours asked if we'd be willing to get Colin's medical records as they thought our son had been involved in some sort of trial. We required Colin's medical records, and there are some very revealing and upsetting questions in there that we didn't even know he had. He was given Factor VIII from an American prison. Why was -- when Colin became so ill there were bio hazard stickers on his records. I just don't understand why we were never told any of this, you know? We – the hospital knew. They knew long, long before I think even Colin was actually born. Colin wasn't born until 82. There were facts and figures out in the late seventies.
LORD ARCHER OF SANDWELL: Knew about the risk you mean?
JANET SMITH: Yes. Like on Colin's death certificate, all that's gone on there is "AIDS" but I don't believe that's what killed him. I believe hepatitis was a much, much bigger risk than AIDS, but it's not on his medical records.
LORD ARCHER OF SANDWELL: Do you still have the medical notes?
JANET SMITH: Yes, I do.
LORD ARCHER OF SANDWELL: Do you mind if we looked at them?
JANET SMITH: I didn't bring them now but yes, you can have them. That's not a problem. And also in his records it shows he actually died of pneumonia. We were never told that either. He was just a little boy, he was dealing very well with his haemophilia. He told us when he had a bleed, but his life was taken with no chance of life and I believe because of research. All we want is answers, not just for Colin but for many of our friends that we have lost and our dearest friends who are still living with the consequences of many, many errors, and I know it's short but I just don't know what else to say, really. But I just think the truth will out.
LORD ARCHER OF SANDWELL: Thank you very much. You have presented it extremely clearly.
MS WILLETT: No, I don't have anything else.
LORD ARCHER OF SANDWELL: Thank you very much, Mrs Smith.
JANET SMITH: You're welcome.
LORD ARCHER OF SANDWELL: Would you like add to anything?
MR SMITH: No, just myself, I want to know why they gave him pure Factor VIII 12 hours before the operation, A contaminated batch during the operation and then switch back to clean, mix and match batches which they shouldn't have been doing anything.
MS WILLETT: I think it will be helpful for us to look at the original medical records you have.
JANET SMITH: Certainly. That's no problem at all.
LORD ARCHER OF SANDWELL: Thank you very much.