Grieving daughter's regret after mother died 'before justice' amid ongoing pregnancy drug fight
ITV Meridian's Social Affairs Correspondent Christine Alsford has been speaking to Amanda Miles from Oxfordshire.
A woman from Oxfordshire has told how her mother died heartbroken because she didn't see her receive the justice she believed she deserved.
Amanda Miles from Didcot said her mother Edna Summerell was given the hormone pregnancy test Primodos in 1973.
The family say it led to Amanda being born with birth defects including two holes in the heart and one leg longer than the other.
She needed open heart surgery to save her life and spent a lot of her childhood in hospital.
Now aged 50, Amanda needs to take nearly a dozen different medications every day and is awaiting a hip replacement.
The company that made the drug - Schering - which is now owned by Bayer, has always insisted there is no causal link between Primodos and what they call "congenital anomalies."
Amanda's mother died two years ago having fought for years to try and get an apology and compensation.
"She always felt guilty, so she wanted an apology from them just as much as everybody did," said Amanda.
"And she's taken that to her grave."
Amanda said her mother wrongly always felt guilty for taking the tablets she thought had harmed her unborn baby.
"She just felt the guilt all the time. Sort of heartbroken really."
Amanda's mother wrote a letter detailing her thoughts and experiences before she died.
Reading her mum's words aloud now and realising how close she came to not surviving as a newborn baby brings her to tears.
Amanda Miles reads the letter her mum had written.
Amanda is now continuing to fight alongside other campaigners with an organisation called The Association for Children Damaged by Hormone Pregnancy Tests.
"We are still adamantly fighting to get justice," said Amanda.
"It's just an ongoing battle to live every day really. I'm stuck in the house. I can't work. I haven't been able to work for over five years. Compensation would help - I just feel we need something for everything we've lost."
Like tens of thousands of other pregnant women, Amanda's mother Edna was given the pregnancy test drug by her family doctor.
Amanda's father Keith Summerell remembers his wife being given two tiny pills at her GP surgery without a prescription.
"Pregnant women were just given the drug out the drawer - and this was the result - (what's happened to) Amanda," he said.
"Not just Amanda but people with leg deformities, arms, fingers - toes. In Amanda's case it was internal organs - the heart...you can't get any worse than that."
The tablets used hormones similar to that in some contraceptive pills - but were more powerful.
Keith said: "The pill that was given was forty times stronger than the normal contraceptive at the time. What's that going to do to a pregnant woman?"
Women claim they can often pinpoint the type of problems their babies suffered to WHEN they took the drug and what was developing at the time.
At five weeks pregnant the brain and spinal cord are taking shape. At six weeks the baby's limbs and ears start to grow. And by nine weeks hands and feet are forming and all the major organs including the heart and lungs.
Bayer said the company has always had sympathy for the claimants but they point to previous studies and investigations that have backed their position.
In a statement, a spokesperson for Bayer said:"In 2017, the Expert Working Group of the UK’s Commission on Human Medicines published a detailed report concluding that the available scientific data from a variety of scientific disciplines did not support the existence of a causal relationship between the use of sex hormones in pregnancy and an increased incidence of congenital anomalies in the newborn or of other adverse outcomes such as miscarriage.
"The Committee for Medicinal Products for Human Use of the European Medicines Agency supported that conclusion." Bayer maintains that "no significant new scientific knowledge has been produced which would call into question the validity of the previous assessment of there being no link between the use of Primodos and the occurrence of such congenital anomalies. "
They say previous legal actions brought by campaigners have been unsuccessful - most recently last summer at the High Court.
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