‘My fight for justice after thalidomide left me disfigured and ageing early’

A brave mother of two has revealed her fight for justice after being born physically disfigured and battling serious health issues because her mother took just two pills for anxiety during her pregnancy – completely unaware of their devastating side effects.

Aussie Lisa McManus, 56, was born in March 1963 to two loving parents living in Queensland – but while her mum and dad were desperate to get a first glance of their little girl on the day she was born, her father was instead ushered out the delivery room and the midwife ran out screaming in shock.

Lisa, who now lives in Bendigo, Victoria, had been born with severely malformed arms – with only three fingers on each hand and no thumbs. She was one of the youngest victims of the thalidomide pharmaceutical crisis sweeping the world at the time.

“Thalidomide babies” suffered extensive birth defects as a result of their mothers being prescribed the drug to relieve morning sickness or anxiety. More than 10,000 children in 46 countries were born with deformities as a consequence of thalidomide use and many more died soon after birth.

Shockingly, Lisa was born seven months after the Commonwealth health department first warned that pregnant women could suffer problems from taking the pill – but it was still being sold in Australia and around the world at the time. The government reportedly rejected advice to issue public warnings, meaning Lisa’s mother Beryl didn’t find out about the dangers associated with it until after she’d taken two of the tablets for anxiety.

“She [Lisa’s mum] was three months pregnant with me, and she remembers very clearly sitting at the kitchen table reading the newspaper, and she saw the headlines that thalidomide had been linked with birth deformities,” Lisa recalled in an exclusive chat with Starts at 60.

“She told my father and said, ‘You know this is what I’ve had’, and that was the light that was switched off for them at that time.”

Lisa explained: “The level of disability was dictated by how many tablets were ingested and at what day, literally what day and even the hour, they were taken.”

In Lisa’s case, her mum had taken just two pills – resulting in her daughter’s disfigured arms and some internal issues. However, other babies suffered much worse issues including facial disfigurements and serious internal problems.

Lisa’s mum was suffering from anxiety at the time which prompted her to take the tablets, but they were also widely marketed as a cure for morning sickness too – which is why so many pregnant women took them.

Recalling the day she was born, Lisa said: “Mum went into labour and dad was in the room at the time – mainly because he was a doctor. Apparently when I was born the head came out, and that was fine, and then these little arms came out.

“Mum says she remember very clearly that dad was sort of being ushered to the main doors to leave and she said she can remember this screaming and recognised fairly quickly that it was the nurse. The nurse ran out of the room. It must have been quite a shock, you’d like to think professionals would have acted differently, but it was what it was.”

Despite her disabilities, Lisa has gone on to live an amazing life, graduating and starting a job as a grief counsellor as well as marrying her husband Andrew and having two children, Patrick, 31, and Alice, 24.

But another side effect of thalidomide poisoning is premature ageing, with Lisa admitting while she’s 56, her body has been equated to that of an 80-year-old.

“Arthritis is kicking and my ability to be able to do a lot of those independent and personal tasks, such as dressing, driving, shopping, cooking, they’re all out the window,” she said. “I can’t work anymore.”

She added: “I can barely write anymore or hold a pen, where once I did all my written work at university by hand.”

Lisa’s husband has since become her full-time carer, giving up his job as an electrician to help with everyday household tasks as well as caring for Lisa’s everyday needs.

“He’s really fantastic, irreplaceable, and his support throughout the years has been just astronomical,” she said.

However, it’s not just Lisa who has been hugely affected by the crisis. Her mother Beryl, who is now 92 and living in a nursing home, has lived with the unbearable guilt ever since.

“I remember once she was in and out of consciousness and really glassy eyes but she’d know I was there,” Lisa recalled. “She’d have her eyes closed but then she’d open her eyes and say, ‘I’m so sorry, I’m so sorry’. I wouldn’t connect the dots and say, ‘What is it, what have you done’? And she’d say, ‘For taking those tablets’.”

Lisa has now set up a lobby group, Thalidomide Group Australia, to campaign for justice all these years later. The survivors are pleading with the Australian government for an official apology, a one-off compensation payment of up to $500,000 for each survivor, plus access to government-funded medical services to help them with their ongoing health issues and prematurely ageing bodies.

Read more: Drug company knew thalidomide was harming babies

She has worked tirelessly over the last few years, sending numerous letters to politicians, until finally West Australian senator Jordon Steele-John heard her plea and got behind her campaign. He managed to start a Senate inquiry, giving survivors the chance to share their stories and be heard.

Monday on #AustralianStory, the survivors left behind after the “world’s biggest pharmaceutical disaster” and their 50-year fight for justice | A Bitter Pill @ABCTV 8pm (AEDT) pic.twitter.com/jhS5VUJX0o

— AustralianStory (@AustralianStory) March 6, 2019

“I think what we’re asking for is parity to what other countries have already done,” she added.

“It was all done under the government at the time… Thalidomide was allowed in, was allowed to be sold, we have letter after letter after letter showing that the government knew deformed babies were being born but did nothing about it. They were informed in December 1961, and it wasn’t until August of 1962 that Australia even banned the sale. So, I’m one of the products of that – they knew about it at the time and did nothing.”

In a statement to ABC’s Australian Story, which features Lisa’s story on Monday night, a spokesperson for Health Minister Greg Hunt said the government recognises the plight of victims of thalidomide and reiterated that services are available under the National Disability Insurance Scheme. They reportedly added that the then-Commonwealth government was not responsible for a thalidomide recall.

“At the time the Commonwealth government did not have the power to remove medicines from the market, including thalidomide, as this was the responsibility of the states,” the statement read.

“The tragedy of thalidomide was the catalyst for the establishment of stronger regulatory controls over medicines in Australia.”