MY HEALTH EXPERIENCE:What just two teaspoons of thalidomide did to my life
MY MOTHER took just two teaspoons of thalidomide when she was pregnant with me.
She took it once. Someone had recommended it for morning sickness. She would have taken more except it made her so ill.
When I was born with no arms and no legs she never thought of the drug which she had bought over the counter.
By the time she took it, doctors had already been advised not to prescribe it any more, but of course she did not know that. I was born in July 1962. I think the Government’s culpability is even worse in cases like mine because they knew, they had warned doctors, but they didn’t ban it and thalidomide was still sold in chemist shops over the counter.
There were many parents who did not know until years afterwards that it was thalidomide which caused their children’s problems. There was speculation afterwards that the Government kept it very quiet because of the fear that pregnant women who had taken the drug would go to England for abortions. I think I was seven or eight before my parents realised. It would never have dawned on parents that a drug which doctors had been recommending could have caused this damage.
None of us has ever received an apology or an admission of liability from the Government. The drug came into the country even though there were warnings. It was untested – and it was sold over the counter in pharmacies for months after the Government warned doctors to stop prescribing it.
I am sure my mother did feel guilty. I have a boy who has Down syndrome and I know there is nothing I could have done, but you do feel guilty. It should never have happened.
My parents and brothers did everything to help me have as normal a childhood as possible. I have spent my whole life trying to be positive. And in many ways I succeeded. I have a great husband, two lovely sons.
But I am tired now. My health is getting worse and I am terrified. And I am angry that we are not getting what the Government promised our parents so long ago. If we were, my quality of life would be so much better. And things would be much easier for my family, my husband and my children.
My mother, who is 82 now, has always been very modern and very understanding.
Childhood and adolescence is a time for living, for playing rounders and hopscotch, laughing, dating boys, trying out new fashions, learning and loving. Instead, I was a little girl and a young woman with no arms and no legs looking on at life.
When I was a child, I remember looking longingly out the window at other children skipping and playing games, but my parents always found something to distract me.
Clothes and boyfriends were an issue when I became a teenager. My granny used to crochet dresses for me. That made me cringe, so my mother started to buy “normal” clothes and cut off the sleeves and legs.
One of my brothers used to take me everywhere with him when we were children. Another brother designed a shower because as a teenager I was embarrassed having to be helped.
I remember on my first day at secondary school there was almost a fight about who would get to push my wheelchair.
But from a very young age, I felt like a guinea pig in a science lab. I did not have freedom or privacy. I was subjected to so many medical examinations. Doctors exhibited me for medical students to learn. I endured invasive and unnecessary tests and operations which caused me great pain and discomfort. This was done to make me look as “normal” as possible. Many of these trials were experimental and most were unsuccessful.
There were countless plaster casts made, prostheses, splints and braces fitted. No one listened when I tried to say that I preferred to use my own limbs. My mother understood but felt powerless to disagree with the so-called professionals.
But when yet another appointment slip came in the door, she saw that I could take no more and she tore it up. I was about 14 at the time.
I used to be very independent. I worked. I lived alone. I drove a car. I was able to cook, to have a bath without any assistance, to do lots of things for myself.
Now my husband has to be with me 24/7. He cannot work or play golf. He cannot go for a pint with his friends in case I need to go to the toilet. My dignity is gone. I cannot do anything for myself. My husband has to lift me in and out of the shower. I did apply for a toilet which I could use on my own and which would cost about €4,000. I was refused point blank.
If I drop the key when I am trying to put it in the front door, then I am stuck there until someone comes along.
Last year, I developed pressure sores which can be life threatening. That was from sitting in my wheelchair. I had applied for a pressure cushion, but had to wait seven months for it. I was sitting on towels, duvet covers anything to stop the pressure.
I have a lot of nerve damage – it is painful if anything hits off me.
I cannot fight any more. I am too old, too tired. I cannot think about what will happen if my wheelchair breaks because I know how long I would have to wait for another one or for it to be repaired. I cannot spend all my time worrying about the future, about what happens if my husband is gone. I am worried all the time.
In 1974, part of the agreement the Government made with our parents was that they would provide all the equipment necessary to help us lead as normal a life as possible. They have not lived up to that promise.
The system is so inadequate for any disabled person that it is disgusting. I was assessed for a wheelchair and I got it one year and three months later.
When a screw goes in my wheelchair I am terrified. If there is a problem it takes weeks for someone to come out and look at it. When I can’t move around in the chair, I cannot help look after my sons. I have a home help five days a week and I live in fear that her hours will be cut.
When my oldest son Gavin was a little boy, I was able to lift him up onto my lap. He’s 12 now. I started to really deteriorate when he was about five. He can remember me doing things with him, but his little brother can’t.
Of course, pregnancy put a strain on my body, but that is one thing I would not change. I have no regrets. I love my boys.
I could still drive if I had a car which was adapted. My peers in other countries are provided with a modified car, but it would cost €70,000.
The Government did pay compensation in the 1970s. We all got a lump sum. Mine was £17,000 – the highest payment. There was a scale of one to 10, depending on what was missing. I also got a monthly allowance from the State, which is now worth €1,109.
I am 47 and I have still not got justice for the horrendous injuries and the crime against me. What is morally wrong should not to be legally permissible. They did the crime, I am doing the time.
It is hard to believe that more than 30 years on, we – who are innocent victims – are still fighting for justice, for what the Government promised us. They made promises to avoid legal action, but they have reneged on those promises. There are only 32 of us. It would not cost the Government that much to give us what we need to make life bearable.
I have written to Harold Evans asking him to help us. When he was editor of the Sunday Times, he forced the British government to take responsibility for thalidomide.
Our Government is fobbing us off by referring this to the State Claims Agency. This is a constitutional issue and so does not come within the remit of the State Claims Agency.
I would like to spend the last years of my life not having to worry where my next chair is coming from or who is going to open my hall door, pull the curtains, do all the little things others take for granted which would not be beyond me if the Government provided the equipment I need.
These are not pipe dreams. They can happen. All we are asking for is justice.
In conversation with Marese McDonagh
THALIDOMIDE: WHAT IS IT?
Thalidomide, developed and launched in Germany, was initially hailed as a "wonder drug" which was an effective tranquilliser and pain killer. It was also regarded as very effective in the treatment of morning sickness, so thousands of pregnant women around the world took it with catastrophic results for their babies, many of whom were born without limbs, with shortened limbs or with internal damage.
THALIDOMIDE TIMELINE: HOW THE SCANDAL UNFOLDED
OCTOBER 1st, 1957: Thalidomide is launched in Germany by pharmaceutical company Chemie Gruenthal sparking one of the greatest medical scandals in history. The drug is sold in 46 countries around the world. An estimated 10,000 people suffered catastrophic birth defects while it is unknown how many women lost their babies and how many died prematurely.
1958: The drug is licensed in Britain. Of those born in Britain with thalidomide- related birth defects, 456 survive.
1959Thalidomide goes on sale in Ireland.
NOVEMBER 16th, 1961: German paediatrician Widukind Lenz alerts Gruenthal to the link between the drug and birth defects. Around the same time Australian obstetrician William McBride highlights similar concerns.
NOVEMBER 1961Gruenthal withdraws the drug.
NOVEMBER 1961:Doctors told to stop prescribing the drug in Ireland.
MID 1962: Over-the-counter sales of the drug cease in Ireland. The government of the time has been accused of waiting almost seven months before informing the Irish public of the dangers of the drug.
1973:Following a bitter legal battle and a long campaign by the Sunday Times, British manufacturer of the drug, Distillers (Biochemicals) Ltd, agrees a settlement with UK survivors.
JANUARY 1973: Campaigner Ralph Nader, who would contest four US presidential elections, writes to the then taoiseach Jack Lynch, accusing the government of having failed in its duty to protect the health and safety of its citizens. Mr Nader claimed that the Government knew that thalidomide was dangerous in 1961 yet waited almost seven months before telling the public that the drug had been removed from sale and was dangerous.
1974: Fund was set up for Irish survivors who receive lump sums, recently described as "minuscule", and monthly payments. Of those who applied, 90 were refused, 34 were acknowledged as having been affected by thalidomide, two of whom have died.
JULY 16th, 1998: The US Food and Drug Administration (FDA) approves the use of thalidomide for the treatment of lesions associated with leprosy. Strict restrictions put in place. Research continues into drug's effectiveness against cancers and other diseases.
DECEMBER 20th, 2009:British government announces that survivors there will receive an additional £20m (€22.5 million) in compensation.
DECEMBER 22nd, 2009:Irish survivors seek apology and once again highlight the inadequacy of their compensation as their health deteriorates. They are demanding a meeting with the Taoiseach.
JANUARY 14th, 2010:The British government apologises to thalidomide survivors over the scandal, with health minister Mike O'Brien expressing "its sincere regret and deep sympathy for the injury and suffering endured".
