'I trusted my doctors': the women fighting for justice after medical procedures

Vaginal Mesh

After the birth of her daughter in 2013 Adèle Yemm, now 46, had mild stress incontinence. She initially planned on pursuing physiotherapy, but was persuaded to undergo pelvic mesh surgery – despite raising concerns that it was inappropriate for women who planned on further pregnancies.

Despite consenting to a so-called TVT implant, she was given a different procedure, called a transobturator tape (TOT), which has been linked to nerve pain. “I was actively persuaded to have mesh surgery but never told of any of the risks of a TOT,” she said. “In fact, I was assured that as long as I had a caesarean section if I had more children, the known risks were minimal.”

She woke up from surgery in terrible pain. “Imagine the sting of a splinter, except this splinter was 20cm long and 2cm wide,” she recalls. She later struggled with severe pain during her pregnancy with twins and went into labour prematurely, which meant she was unable to have a C-section. More than seven years later, she remains in pain, has been unable to work and has undergone several mesh removal operations. “I feel really angry about it,” she said. “It was totally a paternalistic approach. I did everything possible to go to the right people to seek the right advice, but I trusted my doctors.”

Yemm is now taking legal action against the hospital trust, one of several hundred women affected by mesh complications bringing cases with Thompsons Solicitors.

Primodos

Jacqueline Ciseau, 64, was 17 when she became pregnant in 1973. Her doctor recommended a hormone pregnancy test, which confirmed she was expecting a baby. She had a straightforward pregnancy and delivery, but when her daughter was two or three years old, Ciseau became concerned as she hadn’t started speaking or reached other developmental milestones. Ciseau went back and forth between doctors but never got a clear explanation for her daughter’s disability.

She mentioned the hormone pregnancy test, but said that doctors dismissed this as a possible explanation. “The way they treated us was appalling,” she said.

It was only in the 1980s, when she read an article in the Manchester Evening News about Primodos that she felt convinced there was a connection. “Primodos is 40 times the strength of the contraceptive pill,” she said. “You don’t have to be a genius to think that if you give that to a pregnant woman, it’s not going to do the foetus any good.”

However, despite safety concerns around Primodos dating from the 1960s that eventually led to its withdrawal as a pregnancy test, the manufacturer Bayer Pharma (formerly Schering) has consistently denied that there is evidence the tests caused abnormalities in children. “Still today we do not have an answer, we are still struggling to get justice,” said Ciseau. “We’ve been fighting for 50 years. I’m 64 and my husband is 73. I want justice, so our daughter can be looked after when we are no longer around. It’s our daughter who is the victim.”

Sodium valproate

Emma Murphy, 39, was diagnosed with epilepsy aged 12. “I was put on sodium valproate and basically just left on it and told to continue taking it,” she recalls.

When she became pregnant with her first child, aged 20, she mentioned her medication to doctors, but was not warned of any risks. Instead she was advised to continue taking the drug, because it had been highly effective in controlling her seizures. “You believe your doctor, you believe what you’re told because they’re the professionals,” she said.

Murphy went on to have another four children – the five are now aged between 10 and 16 – while still taking the drug. All of them have physical and developmental problems including autism, deafness and cerebral palsy.

When her children were little, she voiced concerns with doctors, but was told she was encountering the “the terrible twos” or dismissed as an “overbearing mum”. “I was questioning how can there be something wrong with all my children,” she said. “We were just fobbed off.”

Then, in 2010 she saw a news report about the risks of sodium valproate in pregnancy, which she describes as a “defining moment”. Since then, all her children – aside from her youngest, now aged three – have been diagnosed with foetal valproate spectrum disorder. However, she says that at no time did a doctor warn her of the risks, or contact her retrospectively to track the outcomes of her pregnancies.

“Women today are still not being warned about the risk,” she said. “That is shocking.”