A mother born with life-threatening birth defects she believes were caused by a controversial drug has spoken out about being one of its ‘forgotten victims’.
Julie Power’s mother was prescribed a now off the market hormonal pregnancy test (HPT), Amenorone Forte, in 1970.
“Immediately after I was born, doctors at Ipswich Hospital saw things weren’t right.” Julie said.
“I was born with an ectopic anus, meaning things were not where they were supposed to be. I had surgery when I was just days old to correct it.
“Then I was found to have heart problems. I had five different heart defects and when I was four, we had to travel to Great Ormond Street for me to have operations.”
Julie, who grew up in Saxmundham, remembers her time in the hospital vividly and recalls not being able to participate in certain sports and activities, even though she outwardly looked like everyone else.
In 2015, the Medicines and Healthcare products regulartory agency (MHRA) called for information about the use of HPTs and their possible effects and Julie and her father, Geoffrey, who lived in Middleton, travelled to give evidence.
“I’m quite a shy person so it was very intimidating. I felt like I was addressing the UN or something.
“This was the first time in my life I had met other people who had been affected by a HPT and it was just heartbreaking.
“Honestly, I felt like a bit of a fraud. Lots of people had it so much worse than I did. There were people with facial disfigurements, some people had missing limbs, and it was devastating to meet all these parents that were carrying such guilt with them.
“I’m a mother now and I just don’t know how you would cope with that feeling that something you did affected your child so badly.”
Julie now lives in Halvergate, Norfolk, where she lives with her husband Neil and son, Henry. She was under the care of Great Ormond Street until she was 19 and still has to have her heart checked regularly.
In addition to her physical problems, Julie has suffered four miscarriages and one still birth, which she speculates could be as a result of the HPT.
“The thing is, you just always wonder. Would it be like this without the HPT? Henry is a little miracle, really. He’s my greatest achievement.”
HPTs were used in Britain between 1953 and 1975 - other countries were quicker to take them off the market than the UK.
It is estimated over one million women used the drug to test for pregnancies. It was also prescribed to ease premenstrual symptoms.
Campaigners have long argued HPTs are linked to birth defects.
However, a recent non-governmental enquiry by the Commission on Human Medicines found there was ‘no causal link’.
The enquiry was criticised by MPs and campaigners and today, backbenchers are expected to call on the government to set up a statutory inquiry to review the evidence.
Julie backs the call for an inquiry and said: “The last report that came out was a total whitewash.”
“The women that were given these pills, my mum and dad’s generation, are all passing away now. My parents are both gone before they saw any justice done.
“They can’t just delay it and delay it until there’s nobody left to give evidence.
“Someone needs to hold their hands up and say ‘we’re sorry’”
Amenorone Forte was manufactured by French pharmaceutical company, Roussel, now owned by Sonfia. Sonfia were unable to respond to a request for comment from the EADT.
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