The loss of your mum is terrible at any age, but Christine Holt was just 24, and her sister only 15, when their mother, Sylvia, died.
Worse still were the circumstances, for Sylvia was killed by a cancer believed to have been caused by a drug she was prescribed during pregnancy.
And to compound even that, the horrific effects of the drug did not stop with Sylvia. Prescribed to prevent miscarriage, the drug – diethylstilbestrol (DES) – has since been associated with gynaecological cancers in the female descendants of women who take it, leaving each successive generation living in the shadow of life-threatening disease.
Male descendants of women exposed to DES can also be affected. It may lead to undescended testicles (a risk factor for testicular cancer), diminished sperm counts, abnormal growths or cysts in the epididymis (the tube which stores sperm), and a smaller penis and testes.
Few will have heard of the tragic scandal of DES, which is thought to change DNA and permanently turn off certain genes associated with the reproductive system.
Indeed, campaigners say it’s highly likely that families are living with inherited ill health without realising exposure to the drug is to blame.
A synthetic form of oestrogen also prescribed to prevent premature labour and stillbirth – which Sylvia had experienced before having Christine – it was given to an estimated 300,000 women between the 1940 and the late 1970s. Today, we know that a reduction in oestrogen levels is a consequence of miscarriage, but back then it was thought to be a cause.
Now 500 families, including Christine’s, have come together with the charity DES Justice UK to raise awareness and fight for recognition of their struggle.
‘So many families have been affected by this drug, it’s utterly heartbreaking.’ Christine Holt and her daughter, Carly, both found pre-cancerous cervical cells
‘So many families have been affected by this drug, it’s utterly heartbreaking,’ says Christine, 74 and a retired chef who lives in Worcester. ‘Now we’re hearing of great-grandchildren, the fourth generation of women prescribed DES, also having health problems.
‘When is this nightmare going to end? My fear is that it won’t because it’s altered our DNA and changed certain genes, so my family will never, ever escape this terrible legacy.’
It’s a heritage Christine is glad her mother didn’t live to see, knowing she would blame herself for the devastating impact on her children and grandchildren. Instead, Christine ‘carries the burden of guilt’ for the medical issues which meant she was absent and depressed for much of her own two daughters’ childhoods.
Likewise, for the fact one developed breast cancer at the age of 45 and both had cervical cancer in their 20s – all of which can be traced back to Sylvia taking DES on the advice of doctors.
Sylvia died in August 1977 aged 55, two years after being diagnosed with bowel cancer. (Christine believes the cancer originated, undetected, in her vagina.)
A month later, aware that DES was almost certainly to blame, doctors contacted Christine and her sister Michelle, asking them to have tests at Birmingham Women’s Hospital.
While Michelle was clear, a smear test showed Christine had pre-cancerous cells related to clear-cell adenocarcinoma (CCA), a rare cancer of the cervix and vagina. In the US, CCA was linked to DES in 1971, at which point doctors were told to stop giving the drug to pregnant women. Shockingly, it continued to be prescribed in Europe until 1978. Christine was told there was a link between mothers prescribed the drug in pregnancy and their daughters developing CCA.
Aged just 24, she was given laser treatment to destroy the cells – she was also warned that the precancerous cells were so extensive, she would need a hysterectomy within a few years and should start a family soon if she wanted one. Yet Christine wasn’t informed of the much wider implications for her female children.
‘No one told me that what Mum had been given was a dangerous drug that had probably killed her, nor that it would totally blight my life and that of future generations,’ says Christine.
This was just the start of what she describes as ‘50 years of hell… never knowing when this legacy is going to claim another victim’.
Since Sylvia’s death, the list of illnesses linked to DES has grown and now includes breast and pancreatic cancers, as well as misshapen reproductive organs, uteruses, cervixes and reproductive tracts, leading to infertility, miscarriage and ectopic pregnancy.
Despite having planned to wait until her 30s to start a family, Christine followed doctors’ advice and soon after marrying her late husband, John, became pregnant with her first child, Carly.
But the DES her mother took had affected the shape of her own uterus, and her labour with Carly was ‘horrendous’ as the baby became stuck and had to be ‘cut out’ of her vagina. Both mother and daughter ‘almost died’, needing blood transfusions and spending four weeks in hospital. Later, Carly developed epilepsy, linked to complications during her birth.
Her younger daughter was born three years later by caesarean, and Christine also went on to suffer a miscarriage and a life-threatening ectopic pregnancy which ruptured her fallopian tubes and damaged her bladder and bowel – all, she says, a result of the DES. ‘It was the start of years of hell, in which I had six surgeries, including a hysterectomy at the age of 32,’ she says.
‘It took such a toll that I became deeply depressed and was unable to be a proper mum.
‘I missed so much, including Carly’s first school play. I remember lying in a hospital bed, knowing it was her nativity and I was missing it – and that still feels incredibly painful.’
Whenever Christine asked doctors if her anatomical issues were caused by Sylvia’s DES prescription, she was repeatedly made to feel ‘silly’. Indeed most medics, she discovered, had never even heard of the potential consequences of the drug.
It was not until the 1990s that she and Michelle – who suffered two near-fatal ectopic pregnancies in her mid-20s due to abnormalities in her fallopian tubes, followed by 13 years of IVF before having a daughter when she was 37 – began joining the dots.
They read studies and research from the US which made clear the links between the drug and changes in reproductive anatomy – and after contacting DES Action UK, which provides advice and support, learned that the descendants of women who took DES are 40 times more likely to develop CCA. And they found that studies in the 1940s championing DES as a treatment to prevent pregnancy complications were seriously flawed.
Never in their worst nightmares, however, did the sisters imagine that their own children and even grandchildren might be affected too – yet the same rare health problems began to emerge all over again.
First Christine’s eldest Carly discovered pre-cancerous cervical cells – like her mother, at just 24. When she asked the consultant if DES could have caused them, he brushed her off and told her that he didn’t know.
Last year, Carly was diagnosed with oestrogen-receptor-positive breast cancer, which is linked to DES. ‘It was so upsetting and I was scared thinking that my maternal grandmother, who I never got to meet, wasn’t much older than me when she died,’ says Carly, now 46, who lives not far from her mum in Worcester with her husband Jeremy, 54. They have two children – Joe, 25, and Lily, 23.
Carly had a lumpectomy followed by four weeks of radiotherapy, and was prescribed the oral hormone therapy Tamoxifen, which stops oestrogen from binding to cancer cells.
She is ‘hugely relieved’ that the cancer is gone but will have regular mammograms for the next five years, and says it’s impossible not to live in fear of the disease returning.
DES Justice UK is lobbying Health Secretary Wes Streeting for a public inquiry into what it calls the ‘silent scandal’. Elsewhere – in the US, France and the Netherlands – victims have been compensated via a fund set up by the pharmaceutical companies that manufactured DES, but no such thing has been established in the UK.
Whenever Christine asked doctors if her anatomical issues were caused by her mother Sylvia’s DES prescription, she was repeatedly made to feel ‘silly’
Carly was diagnosed with oestrogen receptor-positive breast cancer last year. She had a lumpectomy, followed by four weeks of radiotherapy, and was prescribed oral hormone therapy, Tamoxifen
In fact it wasn’t until November last year that the Government formally recognised the suffering of the women affected by DES and Wes Streeting apologised for the role of the ‘healthcare system’ in ‘inadequately informing people and protecting them from known harmful effects of DES’.
Clare Fletcher of Broudie Jackson Canter, the solicitor representing DES victims, says Mr Streeting’s apology is not enough and vows that campaigners ‘will not rest until there is true accountability for the harm and suffering caused, and until the Government provides proper awareness and guidance for treatment’.
A public inquiry is now needed, she says. ‘These sufferers deserve answers. Specifically, who knew what, when they knew it and why action was delayed for so long.’
Carly is enraged by the impact DES has had on three generations of her family.
‘I’m angry that they gave my grandmother a drug that hadn’t been properly tested, meaning she died before we got to meet her,’ says Carly.
‘My mum was so unwell when we were little and this, understandably, made her very depressed.
‘She’d be in bed for days and we couldn’t understand why, so we’d go in and try to get her to play with us.
‘Mum has really opened up about the guilt she feels from this recently, and it’s only now, as an adult, that I can see how hard it must have been for her.’
Christine, meanwhile, says she was ‘devastated and blamed myself’ when Carly was diagnosed with breast cancer. ‘I was tormented by the idea that I’d passed rotten genes down to my kids.
‘My youngest also had abnormal cervical cells and a misshapen womb, which meant she struggled giving birth.’
Meanwhile, Michelle’s daughter Issy, 24, was ‘terrified’ when ‘abnormal cells’ were detected last year during her first cervical smear.
The family’s thoughts are also now turning to any health consequences that there may be for Sylvia’s great-grandchildren.
Christine says: ‘Worrying about what impact it might have on my grandchildren is like having a black cloud hanging over me all the time.
‘I’m thinking of paying for Lily to have tests to see if she’s likely to have any problems starting a family.’
For, astonishingly, those affected by DES are not given regular NHS screening for the cancers they’re at a much higher risk of developing.
‘Every generation should be offered regular screenings for conditions linked to DES,’ says Christine.
‘Instead, we’ve been abandoned, with these ticking timebombs inside of us, terrified of when, and how, they will be triggered next.’
