What's happened to Thalidomide babies?

 
Thalidomide-affected man

Fifty years ago, the sedative Thalidomide was withdrawn after thousands of mothers gave birth to disabled babies. That ageing Thalidomide generation now faces rising care bills - but some hope a possible Nazi link to the drug could bring more compensation.

In November 1961, I was five months old. My family had no idea why their otherwise healthy baby boy had been born with short arms, twisted hands and no thumbs.

But by the end of that month, the truth was finally out in the open.

After a German newspaper reported that Thalidomide was the likely cause for the mysterious spate of disabled babies born in Germany since 1958, the drug's producer, Chemie Gruenenthal, caved in to growing pressure, and on 26 November withdrew all products containing Thalidomide from what had been very lucrative, over-the-counter sales.

A few days later, Thalidomide's British licensee, Distillers, followed suit in the UK. But by then, the damage was done.

Thalidomide has strong sedative properties and many women in the early weeks of pregnancy had taken it to ease their morning sickness, utterly unaware its effect on the unborn child can be teratogenic, or "monster-forming".

Frederick Dove

Fred Dove
  • Born in Hamburg, West Germany, in June 1961
  • Thalidomide-affected hands and hips
  • Five hip operations as a child
  • Grew up in Germany, Nigeria, Netherlands, UK
  • Taught in Sudan 1985-89
  • Joined the BBC World Service in 1989
  • Presented Outlook from 1998-2008 and now occasionally hosts World Briefing
  • Former captain of England's Disability Cricket XI

Limbs can fail to develop properly, in some cases also eyes, ears and internal organs. No-one knows how many miscarriages the drug caused, but it's estimated that, in Germany alone, 10,000 babies were born affected by Thalidomide. Many were too damaged to survive for long.

Today, fewer than 3,000 are still alive. In Britain, it's about 470. Among the nearly 50 countries affected are Japan (approximately 300 survivors), Canada and Sweden (both more than 100), and Australia (45). Spain's government only recently acknowledged the drug was ever distributed there. No-one knows how many Spanish survivors there are. It could be hundreds.

After 1961, the drug didn't disappear - medical researchers discovered it can be extremely effective in certain treatments. Stringent precautions should be taken, particularly with women patients of child-bearing age. But sadly, in Brazil, where the drug has been widely used in treating certain leprosy symptoms, there is now another, younger generation of disabled Thalidomide survivors.

Just as the drug's effect in the womb seems totally random, so too was the compensation received. In recent years, UK survivors have won concessions from the government, the tax authorities and Distillers' successor company, which has boosted current average compensation pay-outs in the UK to around $63,000 (£40,000) a year.

Start Quote

There is overwhelming circumstantial evidence that it was tested as part of their [Nazis'] search for an antidote to nerve gas”

End Quote Martin Johnson UK Thalidomide Trust

But elsewhere, survivors still get nothing, or very little. Of today's 6,000 estimated survivors around the world, nearly half fall under the compensation deal in Germany. That currently provides a yearly maximum of about 13,500 euros (£11,840), which does not cover the needs of those with multiple limb deficiencies. Many have no independent income and require constant care.

Campaigns for higher compensation are gaining support - in Germany and elsewhere. Progress has been slow, but that could change dramatically, if proof is found that it was not Chemie Gruenenthal which discovered Thalidomide, as has always been claimed, but scientists working for the Nazi regime.

Gruenenthal patented Thalidomide in the mid-1950s. But investigations in the past two years have confirmed that the German brand-name - Contergan - was owned by the French pharma-company, Rhone-Poulenc, during the early 1940s, when it was effectively under Nazi control.

It's also now becoming clear that Gruenenthal was part of a post-war network of German scientists and businessmen who had played leading roles during the Nazi era. Immediately after the war, for example, Gruenenthal employed Dr Heinrich Mueckter as chief scientist, who was sought in Poland on charges of war crimes after conducting medical experiments in prison camps, during which hundreds of prisoners may have died.

Thalidomide child in 1968 The severity of the condition varies

"Gruenenthal taking on someone like Dr Mueckter is one of the key factors we must highlight in the Thalidomide scandal," says Gernot Stracke, a leading spokesman for survivors in Germany.

He adds: "To my knowledge, no representative for the German government has yet made any public comments about Thalidomide's possible roots in the Nazi-era, or whether the government would accept greater liability and offer more help to survivors if proof of such a link were found."

Martin Johnson, director of the UK Thalidomide Trust, and Professor Ray Stokes, of the University of Glasgow, are preparing to publish a book after investigating Thalidomide's possible Nazi origins.

Mr Johnson says: "Although, at this stage, we cannot prove that Thalidomide was definitely developed and tested in prison camps by the Nazis, there is overwhelming circumstantial evidence that it was tested as part of their search for an antidote to nerve gas."

For the survivors, decades of coping with stunted, twisted or missing limbs has meant greater wear and tear on remaining joints and muscles, and virtually guaranteed the premature onset of arthritis and chronic pain.

Many who managed to go out and work have already been forced into early retirement, while others who used to rely on their parents for everyday care, can no longer do so. Every year, more and more are becoming totally dependent on other family members, on social benefits or health insurance payouts - or on charity.

Which is why, on 26 November - 50 years on - we, the German survivors, will march, waddle, limp or roll in wheelchairs from the Brandenburg Gate to the Federal Chancellery in Berlin.

To celebrate that we are still alive, and to remember those who never lived.

 

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  • rate this
    0

    Comment number 223.

    I am 50 and cannot believe how few survivors there are now,as I was growing up it seemed commonplace.It is good so many of the victims are leading fulfilled lives. It really was a matter of luck for the children of my age whether mum took/needed the drug as it seemed to be the cure for morning sickness. This did seem to be the drug that ensured better research before release.

  • rate this
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    Comment number 222.

    @Larynxa -- Kelsey indeed should received kudos, but stating there were no thalidomide babies born in the United States is a stretch. Although the FDA never approved the drug, that doesn't mean that physicians didn't receive samples and distribute them to their patients. Please see www.birthdefects.org/research/bendectin_1.php

  • rate this
    -1

    Comment number 221.

    The easier thing today seems to be to seek compensations from Germany bringing up it WW2 past. I just hope the Germans will not seek compensations for those things what we did to them between 1945-1948. It wouldn't end up well.

  • rate this
    +2

    Comment number 220.

    Having observed the horrors of Thalidomide first hand and lived in gracious absence of the repercussions, being 50 and born on 25th Nov in Glasgow my thoughts and blessings go out to all sufferers. Little Laura you rock...

  • Comment number 219.

    This comment was removed because the moderators found it broke the house rules. Explain.

  • rate this
    0

    Comment number 218.

    The chemical companies should all be members of a single association, with linked funding and insurance similar to the Financial Services Authority(FSA).

    Should one company cease to be responsible, (become insolvent) others would be liable for the maintenance of disabled persons (to acceptable limits that might be defined). This would remove taxpayer responsibility in some cases but not all.

  • rate this
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    Comment number 217.

    Distilers company withdrew the product as soon as they knew about the problem with the drug. I know that the people involved at distilers were guilt ridden for the rest of there lives. I know at least one who spent the rest of their life working for charitys particularly with childrens charitys. Possibley to atone for the guilt he felt over the situation.

  • rate this
    0

    Comment number 216.

    Ohhh, it has Nazi connections, how dreadful. Of course Krupp/Siemens, Mercedes, BMW and Bayer used slaves and worked them to death, usually after about three months. And how about BASF, who have that lovely touchy feely ad on TV at the moment. I find it nauseating.

  • rate this
    +1

    Comment number 215.

    My Mum did take the drug when she was pregnant with my brother, and he was born with no ears. He considers himself lucky compared to those born with more severe disabilities, but I know it's been very hard for him. I agree with JRobson that governments should step in on compassionate grounds, rather than awkwardly tiptoe-ing around the subject - present provisions are mind-numbingly inadequate.

  • rate this
    +2

    Comment number 214.

    My history is a little sketchy, but I'm pretty sure that the Nazis had been defeated by the mid-1950s. 1945 sticks in my mind for some reason. And I don't think the Germany of today is really to blame for what happened half a century ago. Why not blame Africa? After all, all humans are descended from the species that evolved there. Oh, because that would be blaming people who are not responsible.

  • rate this
    +1

    Comment number 213.

    Even if the Nazis did develop this drug (which they didn't) they wouldn't prescribe it knowing that the result which we got would happen. They didn't want to produce disabled people. They wanted quite the opposite.





    LOOK OVER THERE! IT'S A CATONKEY!

  • rate this
    +1

    Comment number 212.

    One of the (few) good things the US Food and Drugs Admin did was to prevent the introduction of this drug to the US on the grounds it had not been tested on pregnant women which was absolutely extraordinary since one of its primary uses was to be the prevention of morning sickness among pregnant women.

  • rate this
    0

    Comment number 211.

    So question who made it, what for, who was given it , who after war saw it as a quick buck, what pharmacutical companys took in on, where was it sold (company records) and who is going to take responsibility power again to the people who suffer.

  • rate this
    +1

    Comment number 210.

    It doesn't matter who developed the drug. I really don't care. I care about the victims who need help NOW. Here in the UK there is more than enough money to give to these people to help them. They should not be having to wait years for a legal battle. They have done nothing wrong. They are alive right now & we should be decent people & give them benefits to improve their quality of life NOW.

  • rate this
    0

    Comment number 209.

    @ OLDPIP

    In fact why are the people not better served with compassion by the current crop of political puppets, jiggling about on the world stage?

    Simple answer is there are not enough victims to affect voting and their life span is limited so politicians just ignore them, safe in the knowledge they will go away, shows the morality of our political elite, no compassion to be found there.

  • rate this
    0

    Comment number 208.

    I remember now the thalidomide babes. I was not aware that many had survived. It appalls me to see how little financial support they get to live on. Just looking at Forbes magazine list of the world billionaires, I wonder how many of them could spare a little to help out these human beings

  • rate this
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    Comment number 207.

    The younger brother of a friend had 4 fingers on his shorted arms..he was very lucky it seems...this was in the 60's that I met the brother.

  • rate this
    +5

    Comment number 206.

    I was born without arms (it wasn't thalidomide), I'd really like the BBC to consider the fact that a disability isn't always a negative and doesn't always result in pain and dependency on others. My disability has meant I try things I wouldn't normally, speak to people I'd never normally be fortunate to do so, and have tons of new experiences. I wouldn't change it. Please be more positive.

  • rate this
    0

    Comment number 205.

    Another Nazi drug is money

  • rate this
    +1

    Comment number 204.

    I am so outraged by the term "monster-forming" that I can not read the rest of this or any other work by Frederick Dove.

 

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