‘We were taking 40 times the dose of an oral contraceptive pill’
Families affected by the Primodos scandal in between the 1950s and 1970s have described how they feel “betrayed”.
Families have campaigned for half a century to shine a light on the controversial use of hormone pregnancy tests.
Marie Lyon is chairwoman of the Association For Children Damaged by Hormone Pregnancy Tests, which represents 296 families.
She said that families who took Primodos – the most widely used hormone pregnancy test – between the 1950s and 1970s “blame themselves” for a range of birth defects among children born to some women who took the medication.
The 74-year-old said many were never told of the risks of Primodos and were instructed to take the drug by their GPs as a way of finding out whether or not they were pregnant.
The Association estimates that 1.25 million people took the drugs and thousands of families have been affected, though some may be unaware.
Ms Lyon said: “Our families have been betrayed by government agencies for more than 50 years and continue to be betrayed by current regulators who question our integrity and take away our dignity as human beings by refusing to accept there is a possible association between hormone pregnancy tests and the life changing effects our families suffer even today.
“We continue to blame ourselves for taking the tablets and shoulder the responsibility it caused to our babies.
“There was no discussion offered by our GPs, or patient information leaflets available to advise us we were taking 40 times the dose of an oral contraceptive pill.
“The few mothers who did query why they were asked to take the tablets, were advised it was the current method of determining pregnancy and the tablets would definitely not harm the baby.”
Ms Lyon, from Wigan, said the drugs she was instructed to take in 1970 were “40 times the strength of a oral contraceptive”.
Her daughter Sarah, now 49, was born with a severe limb deformity where half of her arm was missing just below the elbow.
“I didn’t ask because I assumed that was the way that you found out you were pregnant,” she told the PA news agency.
“But I wasn’t given a choice, I was just given these two tablets, told to take them and then if nothing happened I was pregnant.
“When Sarah was born she was born with her arm missing from just below the elbow, but there was a tiny little palm with five little tiny fingers which they had to amputate when she was 13 months old so she could have an artificial limb fitted.
“But she was extremely lucky – some of our members have got young adults in wheelchairs, they are incontinent, some are blind, brain damaged, it is dreadful. She is exceptionally lucky and so am I, in comparative terms.”
Janice Mills was another woman instructed to take Primodos by her doctor.
The 71-year-old from Cornwall told the PA news agency: “I was given Primodos as a pregnancy test in around August 1970 in the very early stage of my pregnancy.
“I remember clearly asking the doctor that if I took the tablets would they have any affect on the baby, she assured me that they were quite safe and would not harm the baby at all.
“I was pregnant and my daughter was born in April 1971.
“When Ann was 10 months old it was confirmed that she had severe Athetoid Quadriplegic Cerebral palsy. Ann has never been able to walk or talk or look after herself at all.
“She now lives in a Care in the Community Bungalow in Essex where she is cared for 24/7.
“During my pregnancy I didn’t take absolutely anything else, not even a paracetamol. I have been constantly told over the last 49 years that Ann’s problems were just one of those things, we were just unlucky.
“I first heard in the news that Primodos could have caused birth defects in the mid 1970’s when Ann was around four.”
She added: “I have known for all these years that Primodos was to blame and the guilt that I have felt is sometimes overwhelming because it was just not necessary for this drug to be given as a pregnancy test.
“I had three other children after Ann so obviously life has been very hard and heartbreaking at times. I try not to think too much about what life Ann would have had, that she has been deprived of marriage and a family of her own. Instead she has to endure all the indignities of someone else doing literally everything for her.”
“I don’t want ‘sorry’ – I want justice for Ann and all the others whose lives have been destroyed by Primodos.”
Kevin Watson’s mother took the hormone pregnancy test in 1963 when she was pregnant.
Mr Watson was born with short upper limbs.
“When my mum was initially pregnant she went to a local GP to get a pregnancy test. The doctor gave her two Primodos tablets to take,” he told the PA news agency.
“I was born in Pontefract Infirmary in West Yorkshire and I was born with the defects – I’ve got short upper limbs and only three digits on each arm,
“My mum didn’t drink, she didn’t smoke. There was no history of genetic diseases in the family or anything like that.”
“I’ve got an outgoing personality and I’ve always had a professional career, but when I was younger – you can imagine being at school in the 70s, there was a lot of prejudice and a lot of bullying.”
He said that the initial investigations “died a death” because there wasn’t any transparency over information.
“We just got on with life really,” said Mr Watson, a operations director in a food manufacturing company.
“In the 70s it was very cloak and dagger.”
Mr Watson, who lives in Pickering, Yorkshire with his wife and teenage son, added: “I’m probably one of the more fortunate ones.
“It is not about a monetary reward or compensation, it’s about acknowledgement and recognition that this is what caused it. This is what the damage was for using a drug that wasn’t thoroughly tested.”
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