Contaminated blood inquiry: Twins with HIV 'treated like lab rats'
- Published
A father of identical twin boys said he believes his sons were treated as "lab rats" after being infected by HIV through contaminated blood products.
The man, known as Mr AB, told the Infected Blood Inquiry in Edinburgh that one of his sons was treated with a trial drug azidothymidine (AZT).
Meanwhile the other was given different medication and later died at age 17 after developing AIDS.
Both boys were treated at Yorkhill Children's hospital in Glasgow.
Mr AB also told the inquiry how after his son's death, his brain was removed for testing without the family's knowledge or permission.
He condemned the "shameful history of this heartbreaking nightmare".
'Mischievous and loved football'
Born in 1975 the boys were diagnosed with severe haemophilia at 11 months old.
Ten years later the family were told both boys were infected by HIV followed by hepatitis C from blood products imported from the US.
Mr AB claimed they had not been told the boys were at risk or that they were being tested for the diseases.
When one of the boys became severely ill, he was admitted to hospitals in Glasgow, where he eventually died in 1992.
The father described his sons as "mischievous" boys who loved to play football and pranks - he said they were infected with an adult disease.
Post-mortem 'nightmare'
But in the hours before the 17-year-old's death, Mr AB said that two doctors had questioned him about funeral plans and possibly carrying out post-mortem tests - described to him as taking fluid from his brain and spine.
He said: "While my son was still alive in bed and unconscious through HIV and hep C, they asked me if I would give them permission to carry out a post-mortem and I said no.
"I said that I do not want it, he's suffered enough."
Six months later a doctor told Mr AB by chance that his son had his brain removed to discover the cause of death.
It emerged that measles had infected the boy's brain, and his father said he was told "if only we had known that, we could have done more" by the doctor.
Mr AB kept the news of the post-mortem to himself for 12 months, saying that the loss of his son was "utterly devastating" and he did not know what to do with the information revealed to him.
He also discovered claims that certain post-mortem details were destroyed on purpose.
Additionally, he told the inquiry the family kept a record of all the treatment they gave their sons at home, but the book was taken by the hospital "to photocopy", but was never returned.
Mr AB added the family still live with the nightmare this could happen to them a second time.
Although he praised the "great care" from the NHS, he claimed that some of the doctors involved have been "closing ranks" over the infected blood scandal.
Next stage
The inquiry, chaired by Sir Brian Langstaff, was hearing evidence on the final day of its Scottish stage in Edinburgh.
Hearings are scheduled to continue in Cardiff from July 23.
It was launched to from patients who contracted HIV and hepatitis from contaminated blood products in the 1970s and 80s, and from the families of people who were infected.
An earlier public inquiry into contaminated blood products in Scotland was labelled a "whitewash" by victims.
The Penrose Inquiry, external - published in 2015 - took six years and cost more than £12m, though its powers and terms of reference were limited.
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