^‘I can’t imagine what my dad thought or felt when a grim-faced doctor led him to a delivery room an hour after my birth,” says Louise Medus. “All I know is that he almost fainted with shock when I was fully revealed and blurted out: ‘Surely you’re not going to allow a child in this state to live.’”

Louise was born at Chase Farm Hospital in Enfield, Hertfordshire, on 23 June 1962 to David and Vicki Mason. Her mother had been prescribed thalidomide to prevent morning sickness.

“Like the other parents of thalidomide babies, I’m sure they were expecting a fully formed baby and some of us didn’t have arms, some of us didn’t have legs, some of us didn’t have arms or legs. Some of us had facial disfigurements and some were so deformed that they couldn’t survive.”

I’m speaking to Louise at the home she shares in Cheltenham with her second husband Darren, also a thalidomide survivor, two round-the-clock carers, and two dogs.

Originally devised in 1957 by the German pharmaceutical company Grünenthal as a risk-free sedative designed to combat morning sickness in pregnant women, thalidomide was first licensed in the UK in 1958 by the drinks company Distillers, under the brand name Distaval.

Despite anecdotal evidence from 1959 that suggested a surge in rare birth defects, the heavily marketed but insufficiently tested drug remained on sale in 46 countries. Altogether 180m tablets were sold until it was withdrawn in the winter of 1961, after irrefutable evidence linking its use to a dramatic global spike in the birth of deformed babies.

Louise’s mother, Vicki, had been prescribed the drug only a few weeks prior to its withdrawal from the market and the irreversible damage was done. Louise was one of the 550 British thalidomide babies who survived beyond their first few months of life.

Almost immediately, her father, David, regretted his reaction when he’d first seen his baby girl. In his memoir he wrote: “I was filled with remorse for the terrible thing I had proposed, in my wild grief, for my stricken little daughter. Remorse merged into the first stirrings of a father’s natural love and possessiveness, and a determination to provide Louise with the best that life could give her.”

On the advice of doctors – advice now discredited – her father decided that Louise’s wellbeing would be best served in residential care. She was sent to Chailey Heritage, a home in East Sussex for children with disabilities, when she was five weeks old. She only saw her parents at weekends and, as she grew older, during school holidays. “I never got the chance to bond with my parents and I’m sure that has been detrimental to our relationship and how we function now,” she says.

Louise stayed at Chailey until she was 17 and it’s an experience about which she clearly feels deep conflict: “I believe my dad made the decision that I was to go away and my mum didn’t have a say, but I do sort of understand where my parents were coming from.

“Dad was only 22 and Mum was 21, and they weren’t supported by the medical people to try and bring me up at home. Other thalidomiders [as Louise and others call themselves] were brought up at home and had big family networks to help them – and they weren’t as disabled as I was. But it’s impossible to say how different my life would have been if I’d been brought up at home.

“When I did try to talk about it with my mum, when I was about 10, it caused great upset, so I never brought it up again. Even though it affected me – and it did, big time – I wasn’t of an age to understand what kind of pressure they were under.”

That understanding came later and, as Louise recounted in her 2009 memoir No Hand To Hold & No Legs To Dance On, becoming a parent herself in 1988 with her first husband John, crystallised her disbelief at her parents’ decision to send her away. “Whether my daughter Emma was disabled or not, I physically and mentally wouldn’t have been able to do it. She is my daughter – she is part of me. My flesh and blood. Like my son Jack. I couldn’t.”

Louise’s father, David, spearheaded a bitter legal battle from November 1962 to April 1973 against Distillers on behalf of all the families affected by thalidomide. Eventually the company was forced to take public responsibility for the scandal and to adequately compensate the families involved.

The settlement package of £26m, distributed between 370 families and the creation of the Thalidomide Trust, was 10 times Distillers’ original offer of compensation but Louise feels that her father’s obsession with the case, no matter how well-intentioned, succeeded at the expense of his relationship with her. “Thalidomide took up the best part of my dad’s life,” admits Louise. David and Vicki went on to have three other children unaffected by thalidomide: Claire, Lindsey and David.

Her mother was so emotionally wounded by the whole experience that it also affected their relationship and it has never really recovered; Louise assumed a skewed role for a child, that of her mother’s protector. “Years later my dad told me about a time when we were discussing the case and mum walked into the room, and I deliberately changed the subject. I could see that when it’s being discussed she looks like she’s been punched in the stomach, so I protect her from being hurt as none of it was her fault.

“I was 11 when the case ended and by that point our relationship was too far gone. Every time I went home I was a stranger for the first few days. By the time it came to the end of the campaign I was just starting to become a woman, a teenager.

“I loved it when I was at home. I got spoilt and I wasn’t just a number, like I was at Chailey, so those moments were something I cherished. But my parents simply didn’t have time to get to know me and because I spent so little time with my real family I didn’t understand the unwritten rules of family life.

“My understanding was mostly picked up from books, television or studying the dynamics of animals like hamsters and how they protected their young. That’s how I learned about family values. It didn’t come naturally to me and I still don’t understand Mum and Dad’s family.”

Despite her unconventional upbringing and lack of traditional parental nurturing, Louise doesn’t begrudge her father’s actions, describing him in the recent BBC documentary Thalidomide: The Fifty-Year Fight, as her hero. “I haven’t been the most perfect daughter because I’ve never understood how families work. Sure, I wish he had spent more time with me but, if he had, he wouldn’t have had time to do what he did. And all those other thalidomiders, not only in England but everywhere else, wouldn’t have got the compensation and the whole thing wouldn’t have snowballed in the way it has.

“There wouldn’t have been the Thalidomide Trust; adapted cars wouldn’t have happened as quickly. Disabled people probably wouldn’t have come out in to the community as fast as they did. So looking at things historically, it would have been really selfish of me to say I wish he’d spent more time with me.

“I’ve got a bond with my kids, I’ve got a bond with my husband, so why wish for something that would have changed history?”

Louise, whose own children are now 26 and 23, has been estranged from her parents for six years and hasn’t seen her brothers, sisters, nieces and nephews during that time. Despite all the hurdles she’s had to face in her life – or perhaps because of them – her capacity for acceptance, forgiveness and understanding is remarkable.

“Having to deal with my problems frustrates and upsets me and I suppose it does make me angry, but because I’ve lived with it all my life I just get on with it,” she says.

“The problem is the emotional side of wishing to be able to do things and not being able to. If I’m in a playful mood with my husband or kids, I can’t just go up and put my arms around them and give him a big hug. I have to actually ask them to come down to me so I can hug them. That’s hard.

“But there are positives,” says Louise, who sits on the National Advisory Council for the Thalidomide Trust. “Thalidomide has made me stronger. It has made me able to understand that there are always people worse off than me and it has given me the opportunity to go into schools to open children’s eyes about disability and discrimination, and to prove to people that having a disability doesn’t mean you can’t do things. You just have to do them differently.

“It also means I’m able to be part of a campaign to make the German government finally force Grünenthal to take responsibility for what happened and to fully address the guilt that mothers and fathers of thalidomide babies feel.

“The parents were never recognised as being victims of thalidomide. They were the ones who had to see their babies born with deformities that were unimaginable at that time. They are the ones that had to make the decisions either to leave their child or to bring them up and the parents are still suffering.

“Not only from guilt for taking the drug, but also from all those years of wondering what is going to happen to their child. All these anxieties that the parents had to go through – and are still going through – have never, ever been recognised.

“All the parents I’ve spoken to still feel that guilt, even though it’s not their fault. Thalidomide has not only affected the survivors, it has affected the survivor’s siblings, their parents and their children. So you don’t just have a thalidomide baby – you have a thalidomide family.”

No Hand To Hold & No Legs To Dance On by Louise Medus is out now priced £9.99, published by Accent Press. To order a copy for £7.99, including free UK p&P, go to theguardian.com/bookshop or call 0330 333 6846