‘You can’t believe it is happening to you’

The Infected Blood scandal has robbed thousands of families of their loved ones and caused unimaginable pain. One lady from Northampton lost her son to HIV more than 20 years ago, and only now feels ready to share his story as she fights for justice in his memory. She spoke with Pulse Magazine.

When their son bumped his head at nine months old resulting in a significant lump, Rosemary Calder and her husband Ray were concerned enough to take Nicky to hospital.

“Initially they suspected his dad and I of abusing him,” Rosemary recalled, “But after blood tests they told us he had haemophilia. To be honest, I was convinced he had leukaemia, so although I didn’t know much about the condition, I was relieved,” she remembered.

Haemophilia is a rare genetic disorder affecting the blood’s ability to clot.

The usual bumps and scrapes all toddlers get into are harder when you have the condition and Nicky was given a crash helmet to wear to protect his head, and trips to the hospital were frequent for the clotting factor, cryoprecipitate to be administered.

Then, when Nicky was three or four, his parents were told of a ‘super new treatment’ called Factor VIII.

“They said I would be able to treat Nicky at home and that it was a much more pure treatment. How wrong can you be?” she sighs, “You listen to the doctor and think they are the ones in the know, so whenever he got a bleed, there I was, pumping this stuff into him.”

Due to insufficient buildings and equipment to be able to produce enough of our own Factor VIII, the UK was buying it in from America where people were paid to give blood.

Many of those stepping up to donate were drug addicts, sex workers and prisoners.

“Had this information been put onto the little bottles we were making up and putting into our children would we have still given it to them? Of course we wouldn’t,” Rosemary said.

“We had no idea until even after Nicky died that this was happening.”

In the early 1980s news broke about a new virus in America and how it was affecting groups including haemophiliacs. Concerned, Rosemary sought reassurance from the experts. She was told to continue the treatment.

“They said the risks of anything happening were absolutely minimal.”

But Rosemary did reduce treatment, only administering it when ‘absolutely necessary’ despite the protests of hospital staff.

During a visit to collect supplies, a doctor told Rosemary, ‘By the way, we took some blood from Nicky in April to test for the virus but they’ve lost it.’

“I hadn’t been informed they had tested for it the first time, but they did do another test…”

In early September the same year, Nicky was excited at starting his new secondary school in Kenton. But the day before he donned his smart new uniform, a letter dropped onto the doormat.

Nicky had tested positive for HTLV-III, an early name for the virus now known as HIV.

“It was indescribable,” Rosemary says, remembering taking in those words for the first time, “I had this little 11-year-old boy ready to start high school the next day, and I had no idea what life would now hold for him.

“The letter also said words to the effect that they were unsure of the implications, but that ‘we think children will not go on to develop AIDS from this virus.’”

She spoke to her GP who said only, ‘You have to dig deep into your reserves and find the strength to cope,’ and somehow that is what she did.

Rosemary and her husband protected Nicky and kept the news a secret.

“We didn’t tell anybody. We were totally isolated, you never knew what people’s reactions would be,” she remembered.

“At the time there were all these awful adverts on TV with the tombstones, and I knew that the little boy sitting next to me had been involved in this absolute horror.

“You can’t believe it is happening to you.”

The family later moved to Milton Keynes, and when Nicky was 14 years old his parents decided they couldn’t shelter him forever. He was a growing teen, and relationships would soon enter the equation. His parents now had the unenviable task of shattering Nicky’s innocence, “…although to be honest, he didn’t seem that surprised. I think maybe Nicky knew a little more than we thought he did,” Rosemary said, “He knew he could always talk to us, but quite honestly he just got on with his life as if nothing had changed.”

He was also a petrol head who loved Formula 1. He was never happier than when sat behind the wheel. Because of his haemophilia, he was able to take his driving test at 16 years old and passed the first time.

Later, he swapped his nice red Metro GTi for a bright orange beetle. He was a familiar sight around Newport Pagnell.

“You could hear him coming down the High Street because it would go ‘bang, bang,’” Rosemary laughed, “He just loved his cars.

“I used to say to him, ‘can you go and post a letter for me, Nick?’ The letterbox was about three houses down from where we lived, but I would hear him go out and get in his car, drive to the bottom of the lane and turn around – just so he could come back and post the letter in the box.

“He always wanted to be behind the wheel of a car.”

Nicky’s ambition was to drive HGVs. It was, says Rosemary, all he ever wanted to do.

But his condition meant that was a dream unlikely to be realised – until his father used his redundancy money to set up a business in industrial machinery removals. It meant that when Nicky wasn’t well enough to work, he could rest without fear of losing his job.

“It boosted his self-esteem that he was able to go out and earn a living rather than living on benefits.”

Nicky got his HGV licence when he was 21 at the first attempt.

“He could have gone off and got a First Class Honours Degree as far as I was concerned because I was so, so proud that he had managed to achieve his dream under the most awful circumstances.”

It would have been easy to be full of vitriol for those who failed him, but Nicky turned his attention to living his life. He was a popular lad with many loyal friends, and he enjoyed the festivity of Christmas, always taking the time to buy lots of presents for his nearest and dearest.

And when his illness put up walls, Nicky would find another way through.

“He never let things get the better of him, never. He was always happy. I can see him now shuffling down the stairs on his bottom when he couldn’t put weight on his leg.”

At 18, Nicky had met the lady who would become his wife, and he later became a father too.

But soon after, his health began declining. Medication often created more problems.

“He was on about 40 tablets a day. As we know now, a lot of the medication at the time was experimental and made people more ill than the virus. It was a really horrendous regime to try and stick to.”

Whenever he was well enough, Nicky would be found behind the wheel working those HGVs. He was a first class fork truck driver. But one morning when he couldn’t get out of bed the doctor was called.

It wasn’t so unusual; ‘probably another bout of pneumonia,’ thought Rosemary. He had been hospitalised twice with the same thing, and very nearly missed his wedding because of it.

“We thought they would get him on antibiotics and he would be home for Christmas.”

But Nicky never came home.

“The doctor told me that he was very, very ill and he was moved to a side room. He had been in the hospital for about two hours when he died.”

Nicky passed away on December 20, 1999, aged 25 leaving behind his wife and 13 month old son. For them, and for his devastated parents, and brother and sister, things would never be the same again.

More than two decades on, lives are still being lost and for the many thousands affected by this scandal, the suffering continues.

Today, Rosemary lives in Northampton and heads up a support group for parents who also lost their children through the same ordeal.

“Nicky’s is one story, but there are so many, and so much heartache. One boy was seven years old when he died, another one was 10.

“Life meant something to them and to all those who loved them. It was all snatched away.”

On paper, they are statistics in an enquiry. But every one of those boys and men who lost their lives, or who are living with the effects of infected blood are so much more than that. 

They are treasured individuals who had the same hopes and dreams as us all, but who never had the chance to see them realised. Nicky passed away because he was unnecessarily infected with HIV and hepatitis C, but that wasn’t who he was.

“I would like Nicky to be remembered for the person he was, and still is in my mind; as a beautiful, happy and loving son, father, husband and brother.”

‘We want Justice’

The Infected Blood Inquiry is investigating why people in the UK were given imported, infected blood and products, how authorities responded and whether there was a cover up.

More than 3000 have died after being infected by HIV and hepatitis C.

Addressing the inquiry in late June, former Prime Minister Sir John Major said victims of the scandal had suffered ‘incredibly bad luck.’

Rosemary Calder was sitting opposite him when he made that comment which was met by gasps of disbelief from families who were in the room to hear evidence.

“There is a lot of anger from his comment. A lot of anger,” she emphasised, “It’s not the first time we have been kicked in the teeth like that by the powers that be and by those who should have had our children’s, our husbands’, our brothers’ and our fathers’ welfare at heart.

“To say it was incredibly bad luck? It might be bad luck if you trip over a paving slab and break your leg,” she said, clearly astonished at the lack of empathy.

“There has been a cover up. I have sat through the evidence, and they just do not want to acknowledge what they did wrong. They are never going to lay the blame at any one door because it was clinicians, haemophilia centre directors, the Department of Health, the Government, the Civil Service and the pharmaceutical companies.

“Many want to see people charged with what we consider manslaughter and murder.

“They knew the risks involved, but they took those risks anyway. It was about money. There was one piece of evidence we heard from one pharmaceutical company that they made two grades of Factor VIII – a basic one and a more purified, safer one. We’ve seen documentation where it was said to import the cheaper one.

“We want justice and contrition from those who acted the way they did without the care that they should have had. 

“I want them to acknowledge the lives that have been lost and ruined.”