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Fifty years ago, the sedative Thalidomide was withdrawn after thousands of mothers gave birth to disabled babies.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
    +3

    Comment number 143.

    The underlying causes of the thalidomide tragedy are well known and involve the different biochemical activities of the drug's two optical isomers, the significance of which seemed to get missed during trials.

    No Nazi conspiracy, I'm afraid, just bad science.

  • rate this
    +4

    Comment number 142.

    We, the able-bodied taxpayers have a duty to our fellow man to support these people, as they are now of an age where they are losing their parental carers.
    Establishing legal responsibility should come 2nd. Governments must set up the care 1st, and after that pursue the organisations responsible, to mitigate the loss.
    We need to behave with common decency, - not the law of the jungle.

  • rate this
    0

    Comment number 141.

    @bedsdriver
    Yes bedsdriver, the testing standards in vigour at the time were not adhered to, such is the evidence.

  • rate this
    0

    Comment number 140.

    Someone or others got sizable commisions for the proliferation of this drug. I'm guessing those monies were well invested, unlike those poor souls! Anyone who benefited financially at the expense of those unfortunates should still be made to PAY!

  • rate this
    +1

    Comment number 139.

    Like J Robson, my mum was offered thalidomide but fortunately declined it. I remember my school having an exchange visit with a school in Weisbaden, then West Germany and I befriended a boy with 'short arms'. It wasn't until many years later it dawned on me that this drug had caused them. There for the grace of God go I.

  • rate this
    +1

    Comment number 138.

    How I do wish that the BBC would get the film made in recent years for German TV that took a full year before it was finally shown. People here do not appreciate that there are people out there who are fighting for the truth to be revealed whether on this or on other matters. After the film more money was actually provided for the victims.

  • rate this
    +3

    Comment number 137.

    Did they know what the "proper" research was then? How many of you have ever taken aspirin? If that had been discovered now it would not pass all the safety tests to go to market.

  • rate this
    +6

    Comment number 136.

    Why should the German government be held responsible because it was discovered by nazi scientists? I don't see that there's any liable connection. It's like saying the Polish government should compensate anybody who has suffered from radiation sickness because the person who discovered radioactivity, Marie Curie, was Polish.

  • rate this
    +7

    Comment number 135.

    Bibi (128) - an important point. It makes no more sense to apply the label "Nazi" to thalidomide than it does to apply it to Volkswagen Beetles or motorways. Unless, that is, you're a media outlet which knows that the word "Nazi" gets a thousand times more attention than the word "German"...

  • rate this
    +1

    Comment number 134.

    My Mum took thalidomide, I was born in 1960 without any symptoms, however I got retina blastoma when I was 3 or 4 and lost sight of my right eye, I know there was a cluster of cases where I came from at the time, but nothing has ever been proven or linked, I've always suspected that someone in the medical profession knows more.

  • rate this
    +2

    Comment number 133.

    And where did most Nazi scientists "retire"? Yeah, you guessed it, the US of A. But no one wants to talk about the fact they gave the world nuclear weapons and lethal injections (did you just think they stumbled across these drugs without doing any 'research').

  • rate this
    0

    Comment number 132.

    Some have stated that thalidomide was a failure of animal testing, but it is not clear what animal testing was done. Their have been reports that thalidomide was never tested in pregnant animals. I have also read reports suggesting the animals were given the 'safe' form, which unfortunately in humans is converted in the body to its damaging mirror image. In any case, compensation seems just.

  • rate this
    0

    Comment number 131.

    @anothervoiceinthe wilderness (86) i hadn't read your comment when I posted. Through both pregnancies I had I started nausea and vomiting at week 6 it continued night and day (not just morning) right until the birth of my children. The second pregnancy I was 1 1/2 stone lighter than I am today at full term. After 3 months of breast feeding I was 7 3/4 stone. I am 7'8". I had no treatment for it.

  • rate this
    +1

    Comment number 130.

    Some years ago a report published in New Scientist suggested that thalidomide did not cause birth defects. The defects occurred naturally but where in the normal course of events the malformed foetus would have been aborted the effect of Thalidomide was to prevent the abortion. If this was the case then the "thalidomide" victim owes his/her existence to the drug. Now that would be a dilemma...

  • rate this
    +1

    Comment number 129.

    Children now adults in developing countries got nothing
    and only they would get the extra money

  • rate this
    +7

    Comment number 128.

    There is a difference between Nazi and German. If we're going to start truly holding countries responsible for the wrongs of the past (or even the present, in some cases), there will be a very long list of nations queuing to make compensatory payments for various misdeeds - headed by the UK, Europe and the USA

  • rate this
    -1

    Comment number 127.

    How did doctors come to the conclusion that it was equally suitable for elderly and pregnant mothers? That it has had such a devastating effect on the developing child in the womb is ample proof it should never have been used on humans at all.

  • rate this
    +1

    Comment number 126.

    Who ever authorised the use of the drug for morning sickness is the one responsible not who ever developed it in the first place even if it was Nazi scientists.
    I am very lucky that my Mother didn't take the thalidomide she was given while pregnant with me (early 1961, NZ) despite severe nausea. While pregnant myself I refused to take paracetamol even, also had severe nausea from week 6 to labour.

  • rate this
    +2

    Comment number 125.

    My daughter was born in February 1959. In August 1958 I was offered a new drug for my severe morning sickness that had to be ordered from London. Thank goodness it did not arrive, as I am convinced it was Thalidomide.

  • rate this
    +2

    Comment number 124.

    'Just as the drug's effect in the womb seems totally random'

    The drugs effects are not 'totally random'. Get your facts straight BBC. The teratogenic effects on foetuses depends on what stage of development the drug was taken during. If it is taken when the limbs were developing then those are effected, but if it is taken after they have developed there is no effect.

 

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