‘Don’t worry, it’s not contagious,’ Lyn Rowe likes to assure people staring at her. Lyn’s jokes are mostly at her own expense. She once gave a presentation to a group of gymnastics coaches, and started with: ‘I don’t know why I was asked to speak here because I’m not very good at the parallel bars.’ Possibly Lyn’s all-time favourite joke is the one she makes when she sees something expensive in a shop. ‘That would cost me an arm and a leg!’
For about ten years Lyn has been speaking at schools for SCOPE (once known as the Spastic Society), trying to build awareness and understanding of disability. ‘I was petrified the first time,’ Lyn recalled. ‘I got Mum to come into the room with me. Afterwards the feedback was good and now it’s just so important to me. I love it.’ These days Wendy and Ian drive Lyn to the schools, and then go for coffee while she speaks.
In recent years Lyn has spoken to up to seventy schools each year. Her message is ‘see the person, not the disability’, and Lyn’s eyes light up when she talks about the visits. ‘I go to the schools with a lovely team and they treat me like anybody else, not like a no-hoper. And I love the kids.’
Watching one of these talks is an experience. On first sight, the students are genuinely amazed and somewhat hushed, a reaction Lyn still notices. ‘You can see the shock on their faces. They’re thinking, wow, she can’t do anything.’ Lyn gives a short prepared speech and then has the students do tasks, perhaps writing with a pen in their mouth, or passing a jelly bean to each other using only a spoon held between their teeth. Her favourite part is question time. How do you go to the toilet? Do you sleep in your chair? How do you get up steps? The younger students ask questions without the filter most adults employ. ‘Some of the older classes hang back. They’d love to ask, but they’re too embarrassed,’ Lyn said. ‘The younger children ask anything.’
When Lyn was a child the Rowe family had annual holidays at a caravan park in Merimbula on the southern New South Wales coast. They stayed in tents and spent their days on the beach. Because Lyn’s wheelchair could not be pushed across the sand, she was carried down to the beach in a big canvas cricket bag. In the evenings Wendy washed Lyn in a bucket or held her in the shower at the communal toilet block. ‘Naturally there were the usual horrified looks,’ Wendy said.
By the early 1970s Lyn was about to become a teenager and was too big to wash in a bucket or hold in a shower. The Rowes needed more privacy and for a few years holidayed in accommodation subsidised by Ian’s employer. ‘But after that we didn’t have many family holidays. Lyn’s needs made them just too difficult, and we didn’t have the money,’ Wendy said.
In 1980 Lyn started work at what was then bluntly called a sheltered workshop. In 2012 it was known as Knox Combined Industries. Lyn loved the place, and in the early days found it a blessed relief from school.
‘I cried a lot during the first two years I was at school. I was very scared, hated being away from Mum, hated being on my [prosthetic] legs,’ Lyn said. ‘I was put in the too-hard basket, or at least that’s what I think. They taught me how to use a sewing machine but didn’t bother to teach me how to read and write properly. I was there from six to seventeen, which was eleven years too long.’
Wendy remembers the almighty fuss every school morning. Lyn howled non-stop as Wendy carried her into the bus and strapped her into a seat. ‘Every single time I visited her at school she always burst into tears. She detested school and was inconsolable about being away from me and her sisters. It got to the point where a doctor prescribed Valium to try and calm her down about it.’ Eventually Lyn accepted that she had to go to school, but she never enjoyed it. ‘She didn’t trust the staff and felt that nobody thought she was worth making an effort with,’ Wendy said. By the time Lyn left school at seventeen, Wendy estimates she had progressed to about the reading standard of a ten-year-old.
Rivalling school in Lyn’s horror stakes were visits to what was known as the South Melbourne limb factory, where she was regularly fitted with new prosthetic limbs to keep pace with her growing body.
I hated my prosthetics. It was the most frightening thing in my life, worse than school. I was young and they were terrifying. They were too heavy and they wouldn’t do what I wanted. The arms were gas powered and they were almost useless. They’d jerk around and I’d get very frustrated and cry.
The legs were even worse than the arms. ‘Disgusting. They were getting longer and longer as I was getting older, and I was getting higher and higher off the ground.’ Lyn fell off her legs about ten times over the years and, because she had no arms to break her fall, she gashed her chin each time. After her back operation at the age of fourteen, Lyn never used her prosthetic limbs again.
The doctor told me that because I had a rod in my spine I couldn’t afford to fall off my legs again. He said, ‘If you want to stay alive, don’t walk again.’ I said, ‘Thank you very much, that will be just fine by me.’ I dumped the arms as well. I can do a lot more with my chin and teeth and shoulders than I could ever do with those arms.
Against that background the sheltered workshop felt like freedom. ‘When I started [at seventeen] it was a plant nursery. I’d take my trusty little pair of secateurs and my trusty little spoon and my apron and I’d pot plants and propagate plants. I loved doing that.’ Later the workshop packaged nuts and bolts and Lyn used her mouth and nose to place the nut on the bolt and tighten it. She also put barcodes on the bolt sleeves. Sometimes she worked as a quality controller checking on her colleagues’ work. ‘That was a great job. I could be a little bit bossy!’ Many of Lyn’s friendships were made at work.
I used to have a girlfriend with cerebral palsy who had epileptic fits at work. Ninety-nine per cent of the time it was me who found her after the fits. I was shocked the first time, but then I thought I have to do something. So after that I just checked she was OK, and then asked someone to call the ambulance.
Sometimes after work a small group of managers and staff would go out to a disco.
One of my girlfriends at work would help me change into nice clothes. She had spina bifida herself and was in a chair. But we’d manage. I went on my manual wheelchair, and at the disco they’d put me in the middle and twirl me around. I don’t know how I didn’t fall out. Sometimes I’d have a Midori and lemonade. They were the good old days.
The Rowe family has dealt with Lyn’s condition with grace and humour but it has, at times, been an exceptionally difficult journey. Every family member has led a different life than would otherwise have been the case. Wendy effectively became her daughter’s full-time carer, her teaching career relegated to an afterthought. Friendships and interests became indulgences to be enjoyed rarely. Yet Wendy believes that in many ways she is a better, stronger person than she otherwise would have been. At the time of Lyn’s birth she doubted she had the resilience to cope with such a profoundly handicapped daughter.
I really didn’t think I would be strong enough. I had three very lovely but dominant, arrogant, chauvinist older brothers who left me feeling insignificant. I was shy and mousey in part because I thought I could never possibly come up to their standard. They were all brilliant; they all got scholarships to university. I couldn’t compete with them.
The turning point came when Lyn was a toddler. ‘The doctors were always talking about her in front of me without including me,’ Wendy said. ‘I put up with it for a long time. Then one day they were talking about taking one of her ribs out and making her a flipper arm. I said, “Excuse me, I’m her mother, please include me in these discussions.” Ever since then I’ve been a lot more assertive.’
The journey with Lyn also tested Wendy and Ian’s faith. They met through a Christian youth group and remained believers. Yet they struggled when in 1962 some fellow churchgoers told Wendy’s parents that ‘the sins of the fathers’ had been visited on Lyn. ‘Whatever they meant by that I don’t know,’ Wendy said. ‘But it was deeply insulting.’
For many years, the family attended church together. ‘We don’t do that anymore. I still believe in God and we have faith, but the church itself plays a less important part in my life,’ Wendy said.
Ian dropped off [going to church] before I did, but eventually I found it hard just to get Lyn out of the house and off to church. And then we’d be patronised by people saying to Lyn, ‘Oh it’s very nice to see you out this morning.’ In the end it wasn’t worth it. It ceased to be that important for me personally to get there. Maybe I’ll come back to it—there’s still time!
Lyn’s sisters—Merrilyn, Alison and Andrea—also felt the impact of a family life completely dominated by Lyn’s needs. And the shock of Lyn’s birth had a severe impact on her father Ian, as did the pressure and financial struggle that followed.
What Ian and his family told us about his struggles was in one respect surprising. Ian Rowe was an impressive character. Clearly an intelligent man and a deep thinker, he kept close tabs on the progress of Lyn’s litigation and asked frequent and insightful questions. Ian was also the family’s nominated spokesman, fronting several crowded press conferences and giving assured performances in what is, for almost anybody, an intimidating setting. He was also warm and courteous in conversation, unfailingly and genuinely interested in the well-being of whoever in our office he was speaking with.
But Ian also suffered from what he called ‘nerves’ and his family saw as anxiety. Several times after the start of the litigation Ian suffered panic attacks and the family called an ambulance. Small details, such as parking arrangements when the Rowes drove to our office, could cause him stress. Wendy and Lyn, with the ease of family members, sometimes gave Ian stick about his ‘worrying’. Once when Ian was talking about his concern about how Lyn would be cared for when he and Wendy were ‘no longer here’, Lyn interrupted. ‘If you’re no longer here then you won’t have to worry about it Bugsy.’
Ian always took the ribbing with good humour, and joked about having been the only male in a house dominated by five forceful women. Lyn would laugh and remind her father that they did have a male dog for a while—‘so you can’t say you’ve never had any male company’. But in developing his witness statement for the court case, Ian was perfectly frank about his struggles in the aftermath of Lyn’s birth.
The birth itself was an obvious shock. ‘Afterwards I often struggled to cope at work, and found stress and pressure very hard to deal with,’ Ian said. Some people appeared to distance themselves from the family, even if they were sympathetic. ‘They seemed a bit reluctant to come to our house, and we always got stares and odd looks when we were out with Lyn,’ Ian said. Despite all this Ian was successful at work for some time after Lyn’s birth. He was promoted to head of the superannuation department at AMP, then to head of sales information and then to head of collector records. But stress and anxiety were constant problems.
‘At times over the years I really battled to get to work at all. There were periods I cried quite often, and at other times I stayed home because I felt too emotionally distressed to go to work.’ Social situations were a particular problem. ‘On one occasion I stayed home from a work Christmas party and Wendy and Lyn went in my place.’
But by 1969, with the birth of Andrea, the couple had four children, so Ian often worked overtime for extra money. His escape from pressure during these years was playing cricket on summer weekends, but it wasn’t enough. Things got worse slowly throughout the 1970s until in 1983 matters reached a head. Family relationships were strained. Merrilyn and Alison had left home after periods of rocky relationships with their parents. Ian was busy and stressed at work and it all boiled over.
I had a breakdown. I couldn’t go to work for long periods. I found it hard even to walk to the shops. I was very distressed. At some point during this period my boss at AMP telephoned me at home and I burst into tears. It was an extremely difficult time for me, and for the whole family. AMP was offering early retirements and I applied for one because I was convinced the best thing for me was to find a low-pressure job.
Ian knew he could not remain unemployed for long: the family needed his income. So he got a job at a local hardware store. But that too was stressful—ordering and pricing and unfamiliar relationships. So he quit and began looking for something else and fortunately AMP came to the rescue with an offer of part-time work. ‘So I started back again, in charge of just a few staff. I coped much better. Everything was much less stressful.’
But life was a constant financial struggle. When Alison got married in 1983 in New South Wales, Wendy and Ian could not afford to go. ‘Ian and I sent what money we could to help pay for the reception, but we were devastated to miss it and have always regretted it,’ Wendy said.
In 2002, when Ian Rowe stopped working, the family had no savings at all. Any extra money had been spent on Lyn’s needs. To make ends meet, Ian and Wendy took out a $40,000 mortgage on their home. They were unable to make repayments and by 2012 the mortgage had risen to $80,000.
During 2012, the year that we spent many hours taking the Rowes’ witness statements, Ian and Wendy were both on age pensions. Wendy received an extra carer’s payment of about one hundred dollars per fortnight. Lyn was on a disability pension plus twenty dollars for each of her school visits. She also earned thirty cents an hour at the workshop, where she greeted visitors and occasionally did some typing. For a five-and-a-half-hour day she earned $1.65. In short, the Rowes’ financial position was parlous.
Ian Rowe never got any effective mental-health treatment. In the early 1980s he was prescribed an antidepressant, which he stopped taking after he saw a television program about its side effects. He also self-medicated with Valium over the years. Once his GP suggested he see a psychologist. ‘I thought that would be weak and I didn’t do it. I now know it might have helped but at the time I couldn’t see that. I’ve still never had any counselling at all.’
Wendy Rowe had a similar regret. ‘If the same thing happened to a young couple today they’d be offered all sorts of assistance, including counselling. Having that would have done Ian a world of good, and me as well.’ Over the years Wendy did the vast bulk of care work for Lyn, though it became more of a joint effort after Ian retired. ‘Prior to that Wendy did almost all of it,’ Ian said. ‘Wendy has been incredible.’ Retiring from work helped Ian’s mental health. ‘But I worry and stress and forget things. And when I feel under pressure I don’t cope at all.’
In March 2012, Lyn Rowe celebrated her fiftieth birthday at the Yarra Yarra Golf Club in Melbourne’s south-east. Family and friends arrived from around the country, and Lyn revelled in the attention. Ian Rowe gave a short eloquent toast, and Lyn’s school friend Mary Henley-Collopy, the thalidomider who had suggested the family contact Peter Gordon, gave a warm and funny speech, at the conclusion of which Mary and Lyn pretended to high-five each other, quite a feat for a woman without arms and a woman with her fingers at her shoulders.
Lyn’s eldest sister Merrilyn had driven down from her home in country Victoria, middle sister Alison had flown in from Queensland, and youngest sister Andrea (whose husband Paul was the superintendent at the golf course) had provided the venue. While Lyn beamed all night, she never appeared happier than when surrounded by her sisters.
Growing up, Lyn and her sisters were close, and Lyn hated it when one by one they moved out of home as young adults. With her sisters she was one of the girls, whereas in public she was the girl with no limbs. ‘Lyn could be a pain just like the rest of us,’ Merrilyn laughed.
When she wanted to get one of us, she’d bite us, or drive her chair over our toes or clamp onto us with her chin. And we were just as mean back. Lyn didn’t get any special treatment. We thought it was really funny to unplug her wheelchair, or put something out of her reach and tell her to get it herself. Once or twice, I might have even pushed her face into her food. You had to be quick though. She’s got such a strong neck that if she knew you were coming there’s no way you could budge her.
Lyn loved the give and take. ‘I was treated like everyone else in the family. Nobody said “poor old Lyn” and put me in cotton wool. I have a really good relationship with my sisters. I’m definitely a people person, I like having people around, having company, especially my sisters.’
When Alison, who is just over a year older than Lyn, was about eight years old, she took Lyn to school to present her to her classmates at show-and-tell.
I wanted to put my hand up and say, ‘This is my sister, check her out.’ Lyn came into class with me and I made a bit of a speech and then Lyn and I answered questions. There was a bit of staring at first but it was a big success. I didn’t have to worry about the other kids whispering and pointing after that.
Alison, who is now a kindergarten teacher, described her childhood as ‘different’. Life unavoidably revolved around Lyn and each sister responded in her own way. ‘Merrilyn was defiant and gave our parents a hard time. I fought back against everyone and was pretty verbally aggressive at times. Andrea struggled with it, but stayed at home much longer than Merrilyn and I did. We moved out as soon as we could.’
Alison described Lyn as an inspiration. ‘I think she’s amazing. I’m so proud of her. I have her picture up at work. My parents are incredible too. Somehow they kept going and they’re still together. I’m in awe of that.’
Merrilyn, who is three years older than Lyn, echoed Alison’s description of their ‘different’ home life. ‘When I brought friends home for the first time I felt obliged to warn them that I had a sister without arms or legs. That’s not something you expect to hear when going around to a friend’s place.’
Friends and extended family members were fine with Lyn, Merrilyn said, but the public was often a different matter. All three sisters said that strangers frequently made cruel or unthinking comments. Merrilyn remembered a trip to the city as a teenager. ‘We took Lyn in a wheelchair and pushed her around, carried her up and down stairs. This was normal for us, but I can still remember the comments we got. They were disgraceful. It was as though we shouldn’t be taking Lyn out in public.’ More than thirty years later Merrilyn was still appalled by the memory. ‘When it’s little kids reacting, it’s not so bad. When it’s their parents, that’s the worst.’
Alison remembered chasing other children who had made insulting or mocking remarks. ‘It happened all the time. Kids were cruel.’ Wendy even recalled strangers shielding their children’s eyes in Lyn’s presence.
The person least upset by the stares and comments was Lyn. ‘I can’t recall Lyn saying even once, why did this happen to me?’ Merrilyn said. ‘I don’t remember her being depressed. She is amazingly positive.’
Merrilyn’s teenage years were difficult. ‘Mum says she neglected me and that’s what made me a horrible teenager. It’s true that I was awful and I did give my parents a very rough time. But who knows, I might have been like that anyway. I can’t put it down to Lyn.’
Merrilyn dropped out of school at seventeen and moved out at eighteen. ‘I wanted to earn my own money and get out of home.’ Recently she returned to study and is completing an accountancy degree. She thought she might have been a better student the first time around if circumstances were different. ‘But I have no regrets about that. Mum and Dad did the best they could in a very difficult situation. They sacrificed everything to give Lyn as normal a life as possible. I could not have done what they did.’
Because of Lyn’s condition all three of her sisters had somewhat traumatic pregnancies. Merrilyn’s first child, Troy, was born when she was twenty years old.
I was absolutely paranoid during the pregnancy. There was no way I was taking any medication. I was seriously worried that my baby would not have arms or legs. Reasoning didn’t help—I was just panicked. First thing I asked the doctor when Troy was born was: does he have everything, is he OK?
Alison admitted to being ‘terrified’ during her first pregnancy, and Andrea was convinced something would go terribly wrong.
I told my doctor about Lyn and he said I’d be fine, but still I worried. What if it wasn’t thalidomide? What if it was a genetic thing and I had it too? I really didn’t believe I could have a healthy baby. I had ultrasounds and everything else, but still I thought something was going to go really wrong. And even when Aleisha was born I could barely believe it. She was perfectly healthy, but I kept checking her to make sure there was nothing wrong.
Andrea, the youngest of Lyn’s three sisters, lived at home the longest, not moving out until she was twenty-four. Andrea was shy and having Lyn as a sister made her feel she was always in the spotlight. ‘You could never hide when you were out with Lyn, always lots of stares and comments. Mum and Lyn seemed to be able to switch off to it, but I never could. I always noticed it. It was relentless. There was no reprieve.’ During school holidays Andrea sometimes escaped to Queensland to stay with Alison.
Andrea remembered her parents being somewhat preoccupied when she was a child. ‘They were surviving and never thought far ahead, they just got through it day to day. When we were teenagers we all got away with a lot. Mum and Dad were so distracted.’ The close bond between Wendy and Lyn sometimes made the other girls feel like outsiders. ‘Mum and Lyn can finish each other’s sentences,’ Andrea said. Alison described Wendy and Lyn as sharing an ‘intense fifty-year connection, they’re a package deal’. The bond is so close that when Lyn went into supported accommodation for a week each year to give her parents a short break, Lyn would ‘just have a total meltdown’, Andrea remembered. ‘Hysteria, sobbing, screaming. She’s much better now, but back then she couldn’t bear to be parted from everyone, especially Mum.’
When Andrea moved out of home she sought counselling.
Lots of it. I knew when I was in my early twenties that I had a few issues. My central problem was with self-esteem. I had this ingrained belief that what I wanted or needed didn’t matter: in fact, I wasn’t entitled to even have wants or needs. Lyn was so needy, her situation was so serious, that anything I wanted or felt was trivial by comparison. Plus there was crippling guilt: guilt that Lyn was so damaged and I was OK. What right did I have to be happy? The way I felt wasn’t Mum and Dad’s fault—they did the absolute best they could. And Lyn was almost always happy and positive. But what could anyone do?
Andrea studied environmental management and worked as an integration aide during university. She has a strong relationship with her parents and is amazed at their lives. ‘Mum just put her head down and worked. So did Dad, even though he struggled a lot. People just accepted their lot then and got on with it and that’s what Mum and Dad did. They are outstanding people.’
Wendy Rowe is very grateful that the family remains close. ‘There’s no doubt at all that the three girls didn’t get as much attention as they wanted or I wanted to give them. Lyn probably got eighty per cent of my time herself, and it was a very unusual family home they all had.’ Wendy feels some guilt about her daughters’ childhoods, but they have all talked about it openly. ‘There have been some difficult moments, but we have a great relationship today, and have had for years now. All four of them are exceptional women.’
The Rowe family’s struggle with the impact of Lyn’s condition was far from unusual. In fact, given the severity of Lyn’s malformations the family survived remarkably well. There are many stories of family break-up and worse. Sadly notorious is the UK case where the father took one look at his thalidomide-damaged baby at the hospital and told his wife: ‘If you bring that monster home, I leave.’ In Australia, one father disappeared on a three-day bender after seeing his baby daughter. Many marriages buckled and broke under the strain. Guilt and recrimination were commonplace. In some families the subject was taboo and children were never told the cause of their condition. Many thalidomide babies were handed over to the state or given up for adoption.
In rare cases parents took more drastic measures. In November 1962 a Belgian woman was acquitted of murder after she admitted having killed her week-old baby who was born with misshapen hands growing from her shoulders. Suzanne Coipel-Vandeput’s trial became a cause célébre in Belgium and a crowd of two thousand gathered at the Liège court to hear the verdict. Coipel-Vandeput’s doctor, Dr Jacques Casters, was charged with complicity, as were Coipel-Vandeput’s husband and two other family members. Dr Casters, who had prescribed his patient thalidomide during early pregnancy, was accused of prescribing a strong dose of barbiturates after the birth, which Coipel-Vandeput mixed with milk and honey and fed to her baby Corinne.
None of the defendants denied the essential facts of the case. Coipel-Vandeput in particular had been open about her intention. When questioned by police after Corinne’s death, she wept and said: ‘At least she’s happy now.’ Despite the apparently strong prosecution case, the jury needed less than two hours to find all five defendants not guilty, a verdict greeted by cheering and chanting in the courtroom and by the crowds outside.
In early 2012 Lyn’s legal team hired a filmmaker to document a day in Lyn’s life. We planned to use the film during the trial, to demonstrate the exceptional level of care and attention Lyn received from her elderly parents. Also, plans were afoot to replace the Rowes’ ageing home, and it was important to capture the conditions in which Lyn had lived for her entire life.
The footage is extraordinary and confronting. So too is Wendy’s account of caring for Lyn, which we took to match the film. At that time Wendy was seventy-six. Ian was seventy-nine and taking medication for blood pressure, for his prostate and for a hernia. Yet they were both Lyn’s full-time carers.
‘Every weekday, Ian and I are up at 6.30 to be ready in time for the carer, who comes to shower Lyn,’ Wendy told us.
In the past I’ve done all of the showering, and we’ve both done the toileting. But now we’ve started getting a carer for the showering because it’s too hard for me to do it alone. I help the carer get Lyn into a sling, which winches her up into the air. She gets pushed along the railing which we have installed in the roof of her bedroom. She’s then lowered into her chair and taken to the shower. In the past, before we had a sling, Ian and I physically lifted Lyn in and out of bed, and her chair and so on. While Lyn has her shower, I make her lunch, and cut it up so that she’ll be able to eat it. Then I find the clothes she wants to wear that day. While I’m doing that, and helping the carer to dress Lyn, Ian gets Lyn breakfast. She usually has stewed fruit and Ian spoons the fruit onto a device that my father made about forty years ago. It’s a circle of spoons, welded together at the ends of the handles, fixed to a base which sits on the table. Lyn can turn it with her head and feed herself with it, as long as someone has put the mouthfuls onto the spoons.
After breakfast, I take Lyn to the bathroom and brush her teeth. On days when Lyn goes to the workshop, Ian puts Lyn into the converted van, and takes her to work. If it’s a school-visit day, Ian and I drive her in our van to the school, and go for coffee while she’s there. If it’s not a school-visit day, while Lyn’s at work I do the washing, ironing, cleaning and some cooking and grocery shopping. There is usually a lot of washing to do, as Lyn’s sheets need to be washed regularly because of accidents. I also do some sewing for Lyn. I make her underpants, and have to adapt almost all of her other clothes. Ian or I collect Lyn from work at about 3.15. She usually needs a trip to the toilet and something to eat and drink when she gets home. After that, Lyn likes to play on her computer. She hits the keys with a pen held between her teeth. Or she watches some television or writes to her pen pals. While Lyn’s doing that, I cook dinner.
After dinner, I sometimes give her a sponge bath. Because of her lack of body surface area Lyn gets hot and sweats easily. Lyn usually goes to bed at about 9.30. I brush Lyn’s teeth. Then Ian and I get her out of her chair and into the sling, and hoist her into bed. We put her into her pyjamas. Ian takes her chair and puts it on the charger.
Any time Lyn is at home during the day, I don’t leave for more than about half an hour. If I need to go to the shops and Ian’s out, I take Lyn with me. Once, many years ago, when Lyn was hoping to have a bit more independence, I left her alone for part of a morning and went to play a game of tennis. While I was gone, Lyn’s chair ran out, and when I got home, she was stuck in the corner of the room, unable to move. Since then, I have not left her on her own for an extended period.
During the night, if Lyn needs to go to the toilet, she calls out and I have to help her with a pan. She probably needs to go to the toilet two or three times a night, and sometimes she’s uncomfortable and calls out so we can move her. For the past forty-nine years I’ve got up several times a night for Lyn. Lyn weighs around forty kilos and it’s more and more difficult for me to move her if she’s uncomfortable in bed. Except for when she’s sleeping, Lyn is strapped into her motorised chair. She sees the chair as the avenue to the only tiny bit of independence she has.
From the very early days of the thalidomide disaster, Lyn’s malformations—completely absent limbs—were seen as one of the things that thalidomide could quite clearly do to a foetus. But doctors did not know with certainty all of the things that thalidomide could do. That was because doctors and scientists were responding to a tragedy, not running a carefully controlled trial. So they made the best decisions they could in difficult circumstances.
In the early 1970s Sydney radiologist Janet McCredie was contacted by Dr William McBride, the Australian doctor who, along with Widukind Lenz, first connected thalidomide and birth malformations. McBride, whose famous and controversial role in the thalidomide story is explored in chapters 12 and 13, was acting as a consultant to the compensation scheme for Australian thalidomide victims. In some cases there was no clear information about whether the mother of the malformed child had taken the drug. So McBride had been asked to help determine which children were thalidomide afflicted and which were not. McBride asked McCredie for advice. Could anything be deduced about whether the children were thalidomide damaged by examining their X-rays?
McCredie studied the X-rays of some accepted thalidomide victims in Australia and the UK. Based on her reviews and research, McCredie developed a theory that was later labelled the neural crest hypothesis. McCredie reasoned that just as thalidomide was capable of damaging nerves in adults taking the drug, so too did it attack and halt nerve growth in the embryo. In summary, her theory proposed that thalidomide acted on the neural crest, damaging foetal nerve growth and causing the failure of normal bone growth in the limbs in a pattern that was somewhat predictable.
McBride claimed to have come up with the theory at the same time, and indeed the two co-authored a paper on the subject. However, after a public spat and the fracturing of their relationship, McCredie was given the credit for the neural crest hypothesis and she has written and lectured extensively on it over the years.
Certainly, McCredie’s thesis was widely praised at the time. In the years after the disaster, thalidomide had resisted the efforts of scientists to pinpoint its mechanism of action, the precise way in which it caused birth malformations. Even today, with all the tools and sophistication of modern science, thalidomide’s mechanism is only partly understood and still resists the best efforts of scientists to fully unlock its secrets.
But in 1973 McCredie believed she had solved the riddle. She became confident in her ability to spot thalidomide cases by checking the X-rays of children over whom there was a question mark.
McCredie’s thesis was also embraced because it provided a scientific explanation for the observations clinicians had made in the wake of the disaster. In thalidomide’s aftermath, doctors in several countries decided who was and was not a thalidomide victim, based in part on the availability of evidence that the mother had taken the drug and on whether the child’s injuries matched a frequently observed pattern. The medical orthodoxy which developed was prescriptive. It asserted that thalidomide usually caused damage to corresponding limbs on both sides of the body, far more often to the arms than the legs, sometimes to all four limbs, but rarely, if ever, to an odd number of limbs. The thumbs were the first of the digits to be affected, and in the forearm the radius was damaged before the ulna bone. There was a host of other injuries also said to be ‘typical’, including damage to the spine, eyes, ears and feet. But they all fitted into a loose framework, backed by the doctors’ observations and later by McCredie’s hypothesis.
This understanding of thalidomide’s ‘typicality’ helped guide who was offered compensation during the early litigation in the 1970s and in the years afterwards. Some people with ‘atypical’ injuries but with solid evidence of maternal consumption were given the benefit of the doubt. But others were excluded because their injuries, even if severe, did not fit the accepted range.
The problem with all that, Peter Gordon realised in 2011, was that nobody had ever been able to check, let alone study, the full range of injuries caused by thalidomide. The strict application of a ‘typical range’ was nonsense: a fiction that applied a scientific rigour which had never existed, Gordon decided.
In short, there was a massive thalidomide tragedy. Lots of foetuses were damaged. Lots died in utero and miscarried. Lots of babies died shortly after birth. Maybe half survived, though even that’s a rough guess. The doctors then studied some of the survivors. So to boil it down, the early doctors studied a fraction of a fraction of the children who had been exposed to thalidomide.
Remember this was not a planned epidemiological study. This was doctors responding to a disaster, saying, ‘Quick, let’s try to work out what the drug has done.’ They seized on the children with the obvious malformations, the most common and the most severe problems. Stunted or absent limbs, anuses without openings, missing ears, missing thumbs. The doctors could not go back to the start and examine the child of every woman who had taken thalidomide in pregnancy. They didn’t know who had taken the drug. So they did what they could and identified the most obvious and common injuries. That’s fair enough. But the glaring mistake some of them then made was to conclude that the most common injuries were everything, the whole lot. That was wrong.
Gordon likes to use a tobacco analogy to point out the error.
The strict limits that were imposed on what thalidomide does to a foetus was like saying, ‘Smoking causes lung cancer and that must mean it doesn’t cause anything else.’ It’s just an error in logic. Smoking also causes heart disease. It causes oral cancer and larynx cancer and oesophageal cancer and throat cancer and emphysema and a lot else. Those diseases are not as numerically apparent or often as graphic and confronting as lung cancer but they’re still there and still caused by smoking. And that’s what was missed with thalidomide. They got part of the range but not the whole range.
Ultimately Gordon and Sally Cockburn put together a densely reasoned fifteen-thousand-word document marshalling all of the evidence about where the early medicine went wrong, poking holes in the orthodox view of thalidomide typicality and critiquing McCredie’s neural crest hypothesis.
Gordon found support for his arguments in surprising places. In the late 1970s the claims of about seventy-five UK children, earlier rejected for compensation, were re-evaluated by an expert panel to see whether any of them should be accepted as victims. About twenty were accepted and notes were kept of the deliberations. One of the most esteemed of the early thalidomide physicians, Dr Claus Newman, was recorded as voicing his doubts about aspects of the medical orthodoxy.
‘Dr Newman went on to explain the difficulties of deciding which were typical and which were atypical injuries,’ the 1978 notes read.
The original descriptive work done on populations known to have been thalidomide-damaged did not give a very comprehensive picture. The doctors involved had looked for the very obvious signs of thalidomide damage such as anotia [absent external ear] and flipper limbs. They did not look for and so did not describe other minor defects.
In that same year, 1978, the UK trust responsible for paying compensation funds to victims was being confidentially offered the same advice. Dr Philip Quibell, the trust’s medical officer, wrote that literally hundreds of victims of thalidomide had been missed because most of the initial surveys lacked merit and could not ‘estimate the real impact of the thalidomide disaster’. Even the better early studies were deeply flawed, Quibell wrote in an unpublished manuscript. Only children who fitted the ‘alleged thalidomide syndromes’ were included and no follow-up was performed to identify latent defects, meaning the ‘clinical spectrum is incomplete’. As a result, Quibell wrote, the scale of the epidemic had been greatly underestimated. He guessed there could ‘really be twice the present number of thalidomide survivors’.
This confidential 1978 advice was saying exactly what Gordon came to believe thirty years later. It reinforced Gordon’s concern about what everyone in Lyn Rowe’s team came to call the ‘old medicine’. Our office was being contacted by many people who believed they were thalidomiders, but had been told they could not be by doctors conditioned to look for ‘typical’ injuries like bilateral shortened arms or absent thumbs. Many of these people had unilateral injuries (to one side of the body: say, a single arm), a category of injury seen as ‘atypical’ but which, when Gordon delved deeper into the historic literature, had always been a feature of the thalidomide disaster.
McCredie’s neural crest hypothesis, which gave backing to the traditional injury view, also had its critics from very early on. In another unpublished 1978 document for the UK Thalidomide Trust, the distinguished developmental biologist Professor Lewis Wolpert described the neural crest hypothesis as possessing a ‘very weak foundation [which] is contrary to all known embryological studies’. He dismissed it as ‘most unlikely’ and suggested ‘damage to the vascular system of the early limb bud’ as a much more likely mechanism. Time would prove Wolpert correct.
In 1972, Trent Stephens, a young developmental biologist from Idaho, started work on thalidomide’s mechanism as part of his interest in embryonic limb development. Stephens, too, grew to doubt Janet McCredie’s theory. A decade later, in 1983, he and one of his students authored a paper describing a study in which they used foil barriers to prevent nerves entering the developing limbs of chick embryos. If McCredie’s theory that thalidomide damaged bone growth by blocking nerve development was right, the chicks’ limb bones, deprived of nerves, would not develop. But the chick bones developed normally, strongly suggesting that the neural crest hypothesis was not the explanation for thalidomide’s effect. During the 1980s and ’90s a mass of work by other scientists followed, which supported mechanisms of action other than the neural crest hypothesis.
Stephens, one of the better known of thalidomide’s many investgators, and a scientist we retained as a consultant, says that over the last fifty years almost forty different mechanisms for the drug have been proposed: ‘Some were ridiculous and some have been experimentally evaluated and dismissed.’ McCredie’s neural crest hypothesis, says Stephens, was a clever contribution to the science, but one that has been set aside.
Modern experts, says Trent Stephens, believe thalidomide is capable of wreaking havoc on the foetus in multiple ways. The most prominent of these are through damaging blood-vessel growth in the foetus (angiogenesis); causing oxidative damage to the tissue and cells of the developing foetus; binding itself to the DNA so as to block the production of specific proteins needed for embryonic development; and by binding to (and disrupting or disabling) a specific developmental control protein. ‘The fact that it seems to act by multiple mechanisms at different biological levels might well explain why it has caused so many more birth deformities than any other pharmaceutical,’ Stephens observes. ‘Thalidomide really can be seen as the perfect storm of teratology.’
The drug’s terrifying and mysterious effect also made it, in the early 1960s, a fascinating drug for scientists; its comeback began almost immediately after it had been withdrawn from sale. Doctors and scientists quickly wondered whether it had caused limb malformations by hindering cell division in the developing embryo. If that were the case, then perhaps it might be effective against cancers, which feature uncontrolled cell division. Soon experiments were underway but without any real success.
The first discovery of a useful application came by chance. In 1964, an Israeli doctor, Jacob Sheskin, was treating a patient with the painful, weeping boils (ENL, erythema nodosum leprosum) that often afflict sufferers of severe leprosy. Sheskin decided to see if a leftover bottle of thalidomide would allow his tormented patient some desperately needed sleep. The drug had a miraculous effect. The patient slept and, even better, his sores quickly began to heal. The drug had a similar effect on others at Sheskin’s Jerusalem leprosy clinic. Further trials followed and the results were persuasive. Thalidomide was generally providing complete remission from the painful boils by the second week of treatment. To this day, thalidomide remains a primary tool in treating ENL in some parts of the world (though it’s not recommended by the World Health Organization).
In 1991 US researcher Dr Gilla Kaplan found the explanation for thalidomide’s success in leprosy. Thalidomide reduced the level of a particular signalling protein, a cytokine called TNF-alpha which makes inflammatory diseases worse, and is found in high levels in ENL victims. TNF-alpha is also often found at high levels in HIV/AIDS sufferers. Soon an underground network was smuggling large quantities of thalidomide into the United States to give relief to people with HIV/AIDS. This created a conundrum for the FDA. Large quantities of a dangerous and banned drug were being used for worthy purposes.
In 1997, Celgene, a US-based pharmaceutical company, submitted an application to the FDA for thalidomide sale approval. A week later a conference was held at which thalidomide survivors, scientists, doctors and members of the leprosy and HIV/AIDS communities expressed their views. Frances Kelsey was there, more than three decades after the first ill-fated application for thalidomide had landed on her desk. After much negotiation, in July 1998 the FDA approved thalidomide for sale for use in leprosy under the brand name Thalomid.
Strict conditions developed by Celgene accompanied the use of the drug, including multiple warnings, detailed information for doctor and patient, a video presentation featuring a thalidomide survivor, a limit on the number of capsules provided at any one time, regular feedback from patients, and a telephone hotline. Females of ‘childbearing potential’ had to return a negative pregnancy test in the twenty-four hours before starting treatment, and thereafter take regular pregnancy tests.
After legalisation the drug’s popularity for HIV/AIDS soon diminished. Thalidomide’s sedative effect often had a severe impact on already weakened patients. But further uses were found. Thalidomide (and more recently its analogues, lenalidomide and pomalidomide) became important in the treatment of multiple myeloma, a cancer that inhibits the production of normal blood cells. The analogues have also been investigated, and are currently under investigation, as possible treatments for many other conditions.
Yet resurgent thalidomide is still dogged by its side effects: its tendency to cause nerve damage in adults and, much more terrifyingly, its capacity to malform the foetus (its teratogenic effect). In some countries the risk of unintended tragedies is a reality. Brazil, with one of the biggest populations of leprosy victims in the world and thirty thousand new cases every year, is now the epicentre of modern thalidomide births. Leprosy is most common in poor, remote areas of Brazil. The people being treated with thalidomide sometimes do not appreciate or understand the dangers of the drug, and it has frequently found its way into the hands of newly pregnant women. There are also anecdotal reports of women taking the drug as a birth-control measure after misunderstanding the picture on the pills of a pregnant woman with a line through the image.
A recent study in Brazil counted about one hundred possible thalidomide-damaged babies in the period between 2005 and 2010. During that same period more than five million thalidomide tablets were thought to have been distributed in the country. Some people believe that the speculated thalidomide toll in Brazil may in fact be an underestimate.
One of them is Dr Neil Vargesson, a developmental embryologist who is investigating whether a safe form of the drug could be developed.
‘I know the Brazilian researchers and they fear they may have only seen the tip of the iceberg,’ Vargesson says. ‘Thalidomide gives great relief to people suffering terribly with leprosy. So nobody can blame patients for using it. But when the safeguards are not used the drug is dangerous. Many of the leprosy victims in Brazil are poor, they live in remote areas, illiteracy is common, they share medicines and that’s how these births happen. It’s a total tragedy.’
Vargesson, who works at the University of Aberdeen in Scotland, has had a longstanding interest in thalidomide but his intense focus on the drug began in 2006 after he saw news reports highlighting cases of children born with thalidomide-like damage in Brazil and Africa. Despite its historic significance, thalidomide’s mechanism was not fully understood and Vargesson decided to investigate.
I wanted to know what it did inside the embryo and how it caused birth defects, and I knew advances in pharmacology and molecular biology would help do that. I hoped we could learn general lessons about drugs and how they act in the body and hopefully how to make them safer. Most importantly, though, I wanted to try to develop a form of thalidomide that does not cause birth defects. If we could keep the anti-inflammatory qualities which make it so effective in leprosy, but get rid of the birth defect risk, then we’d be able to stop the terrible birth of thalidomide children in Brazil and other places.
Vargesson is fighting a valiant but lonely battle. Even Celgene, the thalidomide manufacturer—a company built on the drug’s revival—is not researching a safe but leprosy-effective form of the drug. Of Celgene’s $6 billion-plus global revenue in 2013, more than two-thirds came from the sale of a single thalidomide analogue, lenalidomide. But Celgene is not the source of all thalidomide-related medicines. Thalidomide is off patent, meaning that generic forms of the drug are produced all over the world. In Brazil it is the generic brands being used in leprosy cases that are causing malformations. Celgene says it does not sell any of its own thalidomide in Brazil, nor does it license any other company to sell the drug there.
Celgene’s Australian vice-president George Varkanis said in a 2014 interview that the company regards the Brazilian situation as a tragedy. ‘It’s a drug we have been deeply involved with and it is tragic to see it’s still causing birth defects. Our programs have shown that when it is strictly controlled it can be used safely.’ Celgene says that only a tiny portion of its revenue comes from the use of thalidomide in leprosy cases and that wherever it sells thalidomide or its analogues, it includes a local version of its pregnancy prevention program.
Vargesson, who largely uses chicken and zebrafish embryos in his experiments, is confident that his team is making progress towards a better version of the drug for use in leprosy. ‘You have to understand the drug in order to improve it, and we’re getting there. Thalidomide inhibits the formation and growth of blood vessels in the embryo. In my view that’s the key way it causes damage to the embryo. So if we get rid of that property then it might be safer for the embryo and by extension a much safer drug for use in leprosy.’
Both Vargesson, at the cutting edge of modern thalidomide research, and Trent Stephens, whose research interest in the drug began in the early 1970s, agreed to act as expert scientific consultants to Lyn Rowe’s legal team. Vargesson travelled to Australia just before Christmas 2012, trading freezing Aberdeen for Melbourne’s summer heat. Stephens, who twice made lengthy visits to Australia with his wife Kathleen, is a man of many parts. Since retiring (largely) from his academic life, Stephens has run a costume shop, the Party Palace, in Pocatello, Idaho. He has also written a book in which he reconciled his dedication to science, and embryology in particular, with his devotion to the Mormon Church and its strictures, including the existence of life after death. While in Australia, Stephens spent time in our office, often dressed in colourful Hawaiian shirts, and was accompanied by lawyers Sarah Roache and Brett Spiegel on several trips around Australia and to New Zealand to meet and examine more than seventy of our thalidomide claimants.
Another key medical contributor was Ravi Savarirayan, a charismatic professor of clinical genetics at Melbourne’s Royal Children’s Hospital. Malformations can have a host of causes, known and unknown. The known causes include genetic conditions, amniotic bands (where strands of the amnion break off, float around the womb and wrap around part of the foetus, causing damage), alcohol, drugs and malnutrition.
Where possible we wanted to eliminate competing causes for a client’s condition. Savarirayan was critical in that he was able to advise on the likelihood of a genetic condition and whether a genetic test was available. We ordered genetic tests for about ten of our clients, and the negative results strengthened our claim that the cause of the malformation was thalidomide.
The work by Peter Gordon and Sally Cockburn in dismantling the rigidity of the ‘old medicine’—assisted by the medical experts we consulted—opened up the field for many of our clients whose claims might have foundered under a strict application of the old notions of thalidomide typicality.
But this was only one hurdle facing us. Another key task was dealing with the myth that the thalidomide tragedy was an unavoidable disaster. To do that we would have to establish that, in the early 1960s, Grünenthal and Distillers should have been worried about giving thalidomide to Wendy Rowe and every other pregnant woman.