During the decade of 1980, more of 150 children who had been diagnosed with hemophilia in the United Kingdom were found to be infected with HIV, according to information included in documents from the national archives to which the BBC had access.
Some of the affected families are submitting evidence to a public investigation being carried out into what is known as the worst health treatment disaster in this country.
It all happened almost years (around the end of October 1980 ) and yet Linda says she will never forget the day she was told her son was infected.
They had called her, along with her son from 16 years old Michael, to a consulting room at Birmingham Children’s Hospital.
Michael was diagnosed as a child with hemophilia, a genetic disorder that prevented his blood from clotting normally.
Linda had assumed that the meeting it would have to do with the preparations for the transfer of Michael’s care to the Queen Elizabeth hospital, the most important in the city.
“It was supposed to be so routine that my husband [the Michael’s stepfather] was waiting outside in the car,” he says.
“All of a sudden, the doctor says ‘of course, Michael is HIV positive’, and he said it as if he were talking about the climate. I felt an emptiness in my stomach”.
“We got in the car, I told my husband and we went back to the house in silence. We never spoke, that was the shock”.
Positive test
The AIDS crisis was still beginning: in just a few months, the campaign entitled “Don’t die of ignorance” would bring the disease to every living room in the Kingdom United through a massive campaign.
But the stigma of the disease was already real enough.
For 1986, dozens of parents had withdrawn their children from the primary school in Hampshire after a 9-year-old student – also a haemophiliac – tested positive for antibodies to AIDS, as HIV was known at the time.
Michael didn’t want his friends or family to know.
“That’s how he dealt with it, he kept it to himself”, says Linda.
“He never told his friends or said anything because he just wanted to feel normal”.
In the UK, enter 1970 Y 1991, about 1, 250 people with blood disorders were infected with the human immunodeficiency virus after receiving so-called “Factor VIII” (a treatment with the which restores the coagulating protein that is missing in the body of people like Michael).
Among them were 175 children to whom the doctors of the British National Health Service ( NHS), had been prescribed Factor VIII in hospitals, schools or hemophilia clinics.
It is believed that tens of thousands more may have been exposed to hepatitis C (which can cause liver failure and cancer) either through the treatment itself or through a trans blood fusion.
Furthermore, at that time, half of the people infected with HIV died from an AIDS-related illness.
Drug users
At the time, the UK was not self-sufficient in blood products, so much of Factor VIII was imported from the US
Each batch of the drug was made from the mixture of blood and blood plasma from thousands of donors. Even if only one of those donors tested positive for HIV, the virus could be transmitted.
Pharmaceutical companies in the US paid individuals to donate blood, including in high-risk groups such as prisoners and drug users.
Linda remembers that the first time she heard about AIDS was during a presentation at the Birmingham children’s hospital in 1984, in the that it was warned that certain symptoms had to be watched.
But he says that the family was never fully informed about the risks they faced: at one point, a nurse told them He said there was nothing to worry about because “Michael was fine”.
During all this time, your son continued to be treated with the same American drug.
The old Queen Elizabeth Hospital in Birmingham closed its doors in 2010, and his services moved to a new location.
Michael had shown health problems during his adolescence: from excessive night sweats, to glandular fever and ending in a strong episode of influenza.
But he continued to live his life in p slowness: travelling, listening to music and following his Bromwich Albion football team.
“There was a big game at Wembley Stadium and he was feeling really, really bad,” says Linda.
“So we decorated the car, and he met his friends there. It didn’t matter how he was feeling, if he had a chance to get there, he was going to get there.”
Some time later, As his immune system began to break down, Michael lost weight, began to feel fatigued and lose his memory.
He was transferred to Heartlands Hospital in Birmingham, where Linda – who had to give up her job as a cook – she took care of him at home and nursed him during the last days of his life.
“He told me ‘mom, you are never going to be a grandmother’, I just told him, ‘don’t worry about it’. It was the only thing I could think of to tell him,” says Linda.
Michael developed meningitis, in addition to pneumonia, the two related to HIV with which he had been infected as a child.
Michael died on 26 May 1995, exactly one week before his birthday number 26.
Special Session
Nearly 3 decades later, Linda is submitting evidence to a public investigation into the medical disaster.
He will appear accompanying other parents during a special session on the experiences families have had with infected children over the decades of 1200 Y 1980.
“I felt like I had to do it because I wanted to get to the bottom of it,” she says.
“We all want s to know why it was allowed to happen, and, moreover, why it continued to happen.”
Linda asked that her last name not be used.
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