What did you give us? Fears over drug given to young Scots mothers forced into adoption

https://www.sundaypost.com/fp/forced-adoption-drug/

What did you give us? Fears over drug given to young Scots mothers forced into adoption

By Marion Scott
July 25, 2021, 2:05 pm

Unmarried mothers who were forced to give up their babies were given a controversial drug now linked to cancers and life-changing conditions passed on to future generations.  A synthetic hormone, developed to mimic oestrogen, was given to young mothers to dry up their breast milk after their babies were taken for adoption, leaving them at increased risk of developing rare cancers of the reproductive system.  Even now, few know the powerful drug Diethylstilbestrol (DES) has been linked to a number of breast and vaginal cancers. And it has been shown to cause gynaecological abnormalities and infertility in the children and grandchildren of women given the pills.  A major US study found that the daughters of women who took the drug were 40 times more at risk of the rare vaginal cancer adenocarcinoma, eight times more likely to suffer neonatal death, and almost five times more likely to have a premature baby. The study also highlighted increased risks with early menopause, infertility and ectopic pregnancies.  The sons of mothers who had taken the drug, which was marketed under the names Stilbestrol, Stilboestrol and Desplex, were also at increased risk of infertility and testicular cancer.  The drug, often referred to as just DES, was widely used and marketed throughout the world for a variety of uses, including preventing miscarriage, until 1971 when a Boston scientist first confirmed the deadly links after finding a cluster of young women developing rare vaginal cancers.  The drug was sold by a number of manufacturers who have since settled US litigation cases for billions of dollars but little or nothing has been done to highlight concerns across the UK.

Calls for inquiry

Forced adoption campaigners are now demanding a public inquiry and investigation into the health of women given the drug as well as their children exposed to its wide-ranging effects while still in the womb.  Marion McMillan, 73, from Paisley, who was forced to give up her baby boy in 1966 simply because she was unmarried, said she was ordered to take 16 tablets a day for almost a week after she gave birth in a mother and baby home.  Now dying with cancer, she said: “I’ve met many forced adoption victims over the years who were all given the same drug to dry up their breast milk as quickly as possible after they’d given birth.  It was seen as an inconvenience once we’d given birth so we were told to take the tablets, which were handed out like sweets.  I was given four, four times a day until my breast milk dried up and I was sent home. Looking back, I fear I was given an overdose of very powerful hormones. Nobody ever explained what they were or whether there were any side effects.  I was just ordered to take them, and as a very vulnerable, frightened teenager on my own and disowned by my horrified parents, I had nobody to ask and nobody to protect my best interests.  Like the thousands of other forced adoption victims, I simply did what I was told.”

McMillan claims like many other victims she was denied painkillers, there was no stitching after the traumatic birth of her son, and she says she has been plagued by gynaecological problems ever since. More than two years ago she was diagnosed with adenocarcinoma, which has spread from her lungs to her liver.   She has so far defied the terminal diagnosis she was given following aggressive chemotherapy.  It took 40 years before she was eventually reunited with the son taken from her, unaware that as she searched for him, he was looking for her. She met husband George after returning from the mother and baby home, and the couple went on to have a family together.  The campaigner, whose heartbreaking story brought tears to politicians in the Scottish Parliament last month, has spent decades terrified that the drugs given to her had affected any of her three children.  She said: “I was horrified to learn those drugs can cause increased risks of cancer and a number of other serious health issues in the children I had after my firstborn, and I’ve agonised over that and warned them to be vigilant.  But it terrifies me that so little has been made public about this medical scandal, and I fear most of the women given this drug will have no inkling of the consequences.  I was diagnosed with terminal cancer just over two years ago and I’d like to know whether the drugs I was given played any part in what’s happened to me, and the very least all those other mums and their children deserve is to know the truth about the risks they were exposed to and a check done to see how their health is.”

McMillan, who is due to meet Children’s Minister Clare Haughey along with other campaigners, is calling for a public inquiry so all the health risks and human rights abuses they suffered can no longer be “swept under the carpet”.  She said: “For almost 60 years the 60,000 women who were forced adoption victims have been treated as if we are Scotland’s dirty little secret when our only ‘crime’ was that we were not married when we became pregnant.  But this is no longer just about challenging the morality of society at that time. There are extremely serious health implications that must be addressed for the women who were given this drug and the generations of their children who may be suffering the lasting effects.  The health time bomb is ticking and the government cannot continue ignoring what was a truly dreadful part of Scotland’s history.  Very few women given those drugs will even know the danger we were exposed to, or the effect on our children and grandchildren.”

Civil law expert George Clark of Quantum Claims said the government had a duty to investigate: “The government must find a way to fully assess just how widely these drugs were administered, and health authorities must be able to follow-up with health checks.  Everyone affected must be given the full information available on all the known side effects so they can be vigilant and seek treatment if necessary.”

MSP Monica Lennon, who has led Holyrood’s Cross Party Committee on Women’s Health said: “It’s bad enough that SNP ministers have tried to sweep the mental health impact of forced adoption under the carpet.  The physical impacts must be brought into the light too, including the potential link between cancer and drugs women were made to take to stop their breast milk.  A formal apology from the Scottish Government would finally acknowledge all of the damage inflicted on the mothers and their babies, and unlock a full investigation into these cruel and sinister practices.”

The drug

DES was developed by British biochemist Edward Charles Dodds in 1938.  Dodds never intended it to be used as a drug and didn’t patent it, allowing more than 200 drug companies around the world to manufacture DES.  Increasingly concerned over the many uses DES was being prescribed for, Dodds spoke out fiercely about the use of synthetic hormones due to the unknown effect they can have on the body and future generations.  Diethylstilbestrol, known as Stilbestrol in the UK, was initially thought to prevent miscarriage and help with period pain. It was also used for a number of other issues, including preventing women growing too tall.  It was even used as chemical castration, administered to Enigma hero Alan Turing to “treat” his homosexuality as an alternative to prison. The side effects were awful and Turing would later take his own life.  In 1970, a Boston doctor identified links between the drug and rare vaginal cancers in young women and after a Food & Drug Administration alert, it was gradually withdrawn except for small doses used to treat prostate cancer in men.  Despite huge settlements in the US to victims, very little is publicly available in the UK. Australia’s forced adoption victims asked their government to act during the country’s official apology in 2013, but are still waiting.

The film

Hollywood writer Caitlin McCarthy is about to cast her film Wonder Drug which will tell the story of how DES was given to millions of unsuspecting women with devastating consequences for generations of children.

McCarthy, 50, said: “I only discovered when I was 35 that I was a victim of this drug. It was given to my mother before I was born and of course she, like so many other women around the world, had no idea she’d been given it or what the consequences would be.  I’m what is known as a DES Daughter, although the effect of the drug continues down through generations, too. I have structural differences in my cervix, and need regular check-ups as I’m at increased risk of breast and vaginal cancers.  I was extremely lucky to be diagnosed when I was, during a routine operation, simply because the doctor I had was experienced in recognising the effects of the drug. It was devastating, not just for me but also for my poor mother Ann who immediately felt terribly guilty even though she had no idea she had even been given DES in a prenatal vitamin treatment.  After the shock of what I’d been exposed to subsided, I began researching how this happened and discovered DES was given to millions around the world. My film exposes the fortunes made by the drug companies, and those who turned a blind eye and did little to warn victims even when the cancer links became clear in 1971.  For over 40 years this scandal has been shrouded in silence even though so many people and at least three generations are affected. Everybody has heard about Thalidomide. But hardly anyone has heard about DES. I aim to change that.”

McCarthy is calling on governments around the world to alert women who were given the drug and for health checks for them and any children they have since had.

She said: “It’s desperately sad DES was given to victims of forced adoption who not only suffered by losing their babies, but their health and the health of their other children has been put at dreadful risk because of this drug.  It’s a tragedy that this happened at all. But the resounding silence that surrounds it is one of the biggest medical scandals of all time.  The silence cannot be allowed to continue. People deserve the truth. They need help and support. Governments cannot continue ignoring this issue.  It saddens me and angers me that in all these years there has been no proper apology from either the drug companies or the watchdogs who were supposed to prevent any of this happening.  When the first links with cancer were first identified in 1971, the Food & Drug Administration could have issued a ban and taken action so the rest of the world would sit up and react.  Instead all it did was issue an alert and little notice was taken. That was shameful. In 2011, the FDA finally admitted DES was a ‘tragedy’. But they still did not apologise.”

Oscar-nominated director Matia Karrell aims to premiere Wonder Drug next year.  McCarthy said: “I hope the film will get people talking. The silence has already damaged millions of lives. It has to end.”

Ministers urged to apologise to victims

Clare Haughey

Marion McMillan will urge the Scottish Government to give a formal apology to the victims of Scotland’s forced adoption scandal when she meets a minister this week.  She will see Clare Haughey on Thursday when she will ask the minister for children and young people to encourage the Scottish Government to apologise.  First Minister Nicola Sturgeon said she felt “deep sadness” over the issue and would consider an apology after Labour MSP Neil Bibby raised the cases of Marion and 60,000 other Scottish mothers.  Meanwhile, MP Lisa Cameron, who sits on Westminster’s all-party Health Committee, said the revelations about the drugs given to victims were deeply concerning: “This is yet another disturbing, hidden aspect to the forced adoption scandal. I’m raising questions in the House of Commons and have written to the Scottish health secretary.”

The Scottish Government said: “We have enormous sympathy for the women and families who have been harmed by Stilbestrol.”

It will “highlight this issue” with UK drug watchdog the Medicines Healthcare Products Regulatory Agency, which said in 1973 the Committee on Safety of Medicines wrote to doctors to advise against using the drug to treat pregnant women.  In 2002, the Royal College of Obstetrics and Gynaecology reported 14 cases of cancer linked to the drug. It said: “Women who believe they may have been exposed to DES in utero and are concerned about the risks of vaginal and cervical cancer should be offered careful monitoring by annual colposcopic examinations.”