‘I prayed, “Just let my baby see her first birthday”‘

Jo Moreno’s baby girl did turn one, but died days after this photo was taken. She was just one of hundreds of victims of an appalling medical scandal. Fifty years on, Lorraine Fisher meets the families still fighting against a tide of shocking cover-ups and injustice.

Jo Moreno’s daughter Nicola
Nicola’s first and only birthday

Sitting in an armchair, tenderly cradling her sickly 11-month-old daughter in her arms, Jo Moreno made a deal with God. ‘Lord,’ she prayed, ‘if you let me have her for her first birthday, you can take her.’

Jo got her wish: a few days later her beautiful little girl Nicola was blowing out a solitary candle on her cake, surrounded by her doting family. But within weeks Nicola was in hospital again, never to come home. The health problems she’d been born with had overwhelmed her young body and she stood no chance of survival.

It ripped a hole in her mother’s heart, but even worse was to come. Because years later Jo discovered the cause of all her daughter’s suffering wasn’t the sheer bad luck doctors had suggested. Instead it could have been due to two tiny white pills she had been given by her GP as a pregnancy test.

Called Primodos, the pills were taken by around 1.5 million British women from their introduction in the 1950s until shortly before they were taken off the market in 1978. Unknown to Jo, even by the time she took them in 1970, concern had already been raised about a possible link between the tablets and birth defects in the UK. Babies whose mothers had taken those pills were being born with life-changing and devastating facial deformities, heart defects, brain damage and limbs missing. Many were stillborn. Yet doctors continued to dish them out.

Primodos advert
An advert for Primodos, 1961: before this, pregnancy tests were slow and used live toads. Image: Sky TV

In perhaps the greatest medical scandal since thalidomide (the tragedy in the late 50s in which anti-sickness pills given to expectant mothers caused severe birth defects and thousands of neonatal deaths), increasing evidence was ignored and research was destroyed as part of a massive cover-up. It’s left a legacy of heartache and pain for the now grown-up children who are living with crippling disabilities and the mothers like Jo who lost their babies.

She’d had an easy pregnancy and birth and was given no cause to be alarmed even after Nicola was born on 4 October 1970: she was perfect. But within days the vomiting began. ‘The health visitor told me all babies were sick,’ says Jo, now 71. ‘But when I burped her she began projectile vomiting. After three or four weeks I saw my GP and we were rushed to hospital by ambulance.’

With no scans available in 1970, doctors cut Nicola open from chest to stomach to find out what was wrong. ‘They said, “She needs a new liver but that’s not an option. You’ll be lucky to have her for three months – her bile duct didn’t form”,’ remembers Jo, whose husband was alongside her. ‘We felt disbelief – we didn’t quite grasp it.’

At home, Nicola was a happy baby but suffered constant periods of sickness. Her stomach would swell so much she was regularly taken into hospital to have litres of fluid drained from her abdomen. By the autumn of 1971, it was happening so frequently that Jo made her deal with God. ‘I knew if I didn’t have her for her first birthday, I’d never have coped at all.’

Jo Moreno with baby Nicola
Jo Moreno with baby Nicola in 1971

A few days later, Nicola was admitted to hospital for the last time. ‘They prised her out of my arms and sent me home. As I walked out, I could hear her screaming, “Mummy! Mummy! Mummy!” That was her first word and her last.

‘She lapsed into semi-consciousness the next day and died the day after, without us by her side. It haunted me for years, wondering if my daughter died thinking I’d deserted her.’ For Jo, there followed decades of guilt. ‘I felt I’d failed as a mother because I couldn’t protect her. My husband also blamed me. He said there must be something wrong with me and we split up two years later.

‘I felt like someone had ripped out my heart and left a big black hole. And I felt so worthless.’ A postmortem examination showed Nicola had died of liver failure and failure of her bile duct, but doctors assured Jo they’d been caused by simple bad luck, nothing else.

Then, in 1978, she saw a newspaper article calling Primodos ‘the new thalidomide’. Unknown to Jo, who lives in Devon, the Primodos tablets she took contained the same hormones as oral contraceptives but at 40 times the dose. At the time they were seen as a quicker and cheaper alternative to the traditional pregnancy test, which took days to await the results. With a hormone test like Primodos you took one pill one day, the second the next. If you bled you weren’t pregnant, if you didn’t you were.

Primodos newspaper headline
The scandal was one of three highlighted in a recent report, which hit the headlines this July

As with most pregnancy tests, they were generally taken four to eight weeks after conception – a crucial time when the baby is forming. Campaigners believe whatever part of the baby was developing when you took the pills is what was affected. But when Jo first read about the scandal eight years after Nicola was born, she didn’t have the strength to do anything. That changed the next time she read about it three years ago. ‘I realised I wasn’t the only one,’ she says.

Spurred into action, Jo contacted the Association for Children Damaged by Hormone Pregnancy Tests (ACDHPT). Set up soon after the scandal came to light, it’s now run by Marie Lyon and is seeking justice for all the families affected. They’re currently pursuing pharmaceutical companies Bayer, which in 2006 took over Schering, a company that produced Primodos, and Aventis Pharma – which also made hormone pregnancy tests – and the Secretary of State for Health through the courts. The group action involves hundreds of people and will this week serve the particulars of their claim on the defendants.

Their leader Marie has her own reasons for being involved in the fight to hold the drug company and others to account. At the same time as Jo was giving birth in Devon, Marie was having her daughter Sarah in Wigan. She’d had a good pregnancy but when Sarah was born nurses rushed her out of the room. ‘I sat waiting, thinking they’ve been a long time. Then two nurses came in with Sarah tightly wrapped in towelling. “I’m afraid we have some bad news,” they said. I thought she was ill or that she wasn’t going to live – it was such a relief when they said her left arm and hand hadn’t formed. At the end of the elbow was a pad with five tiny little digits which should have been her hand and fingers. But she was beautiful with a mop of black hair. Absolutely gorgeous.’

Marie Lyon and daughter Sarah
Marie Lyon with daughter Sarah, 1971

Marie, now 74, adored her daughter but it wasn’t always easy. ‘Other people’s reactions were the hardest to bear – my husband’s mother cried, “You’ll have to hide her hand!” But the biggest impact was when she started school.

‘Children were frightened of her because the prosthetic arm she had was horrible. They used to call it a doll’s arm – it was very heavy and if she turned around quickly and it caught anyone it was painful. When Sarah was five, an artificial arm came out that was more flexible but she was deemed too old. It was heartbreaking – I tried everything but they wouldn’t allow her to have it.’ Being stared at so much affected Sarah’s confidence. ‘It does to this day,’ says Marie of her now 50-year-old daughter. ‘She’s still got that wary feeling with new people. But she’s not let it hold her back. She’s always worked – I’m extremely proud of her. But mentally it’s been a barrier throughout her life. She missed out on a lot – teenage photos, physical jobs…’

It was only when Sarah was eight that Marie was asked if she’d taken Primodos by the then chairwoman of the very association she now runs. ‘The bells rang loudly. That was my first indication something had happened. It was crushing.’ Marie joined and has fought for justice ever since, becoming chair of the 400-strong group in 2012.

In 1982 they tried to sue Schering, the German manufacturer of Primodos. But, against the might of a massive drug company, they found themselves outgunned and had to drop the case. Years passed and the affected children grew up and started asking questions. The case against Schering began to grow.

Marie Lyon, Yasmin Qureshi MP and campaigners
Marie Lyon (second from right) with Yasmin Qureshi MP (centre) and campaigners in 2017. Find more details on the campaign at primodos.org. Image: PA Archive/PA Images

The alarm had first been raised in 1967 by Dr Isabel Gal from Queen Mary’s Hospital, Carshalton, who noticed many mothers who took Primodos seemed to have babies with abnormalities. She told Professor William Inman, the head of the Committee for Safety of Drugs – the then regulators – who conducted his own research. His study took until 1975 – during which time women continued to be prescribed the little white pills. Its interim findings concluded foetal abnormalities were being recorded among women using hormonal pregnancy tests like Primodos. He later destroyed his research to prevent claims being made using it.

A warning was put on the packaging and two years later a leaflet was sent to doctors about the link. This wasn’t enough to win the first case in 1982. But along with new evidence it’s hoped the current case will be successful.

‘They want justice,’ says their solicitor Lisa Lunt. ‘They want that acknowledgement, an apology and also the parents who’ve cared for the victims with life-changing injuries want to know that when they’ve passed, there’s a pot of money to ensure their children are properly looked after.’

Independent scientists have reviewed all the evidence and believe it shows an association between the pills and birth defects, while laboratory tests show the drugs in hormone pregnancy tests affect the foetal development of zebrafish – which are genetically quite similar to humans. Bayer has commented that in 2017, the Expert Working Group of the UK’s Commission on Human Medicines published a detailed report. This, says Bayer, concluded 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 malformations in the newborn or of other adverse outcomes such as miscarriage’.

No amount of scientific reviews can turn back the clock for Linda Phillips. Her daughter Laura was stillborn in December 1976, nearly a decade after concerns were first raised. She’d been given Primodos as a pregnancy test. ‘I delivered the baby and the nurse immediately left the room with her. About 15 minutes later I asked if my baby was OK. A doctor said, “The baby died,” very coldly. She was almost abrupt.’

Linda Phillips with sons Kevin and Richard
Linda Phillips with her sons Kevin and Richard in 1986. Her daughter Laura was stillborn in 1976

Her world spinning, Linda, from Merseyside, was told the top of Laura’s head was missing. ‘They said, “Go home, forget about it and try again.”’ But Linda, now 71, couldn’t forget. She went on to have two sons but it was only when she saw a Sky documentary about Primodos three years ago that she realised. ‘That’s when I put two and two together,’ says Linda. ‘I remember my doctor giving me two little tablets and saying, “Take one tonight and one tomorrow and if nothing happens, come back and see me because it means you’re pregnant.” You never questioned your doctor in those days.’ Now she wants the people responsible held to account: ‘We were guinea pigs,’ she says. ‘And the lies and the cover-up make you so angry.’

Jo Moreno agrees. ‘I’d like the opportunity to sit the drug company down and show them the picture of my beautiful little girl on her first birthday, then the picture of the grave she was in five weeks later and say, “This is because of your drug.”’

If you believe your family has been affected by Primodos, please tell us at you.features@mailonsunday.co.uk.