The majority of families who had babies damaged by Thalodimide have never been recognised, writes Terry Prone.
BEST health news ever. A magic bullet from Germany that solved the worst pregnancy problem
Women suffering grievous morning sickness could get relief and also sleep better, having taken it. The nine expectant months flew happily by. The baby arrived.
A fair number of the babies born to mothers who had taken the drug didn’t survive, but it was the ones who did survive who caught the public imagination. Eventually.
At the start, the parents assumed what had happened to their newborn was an act of God. A random atrocity with which they — and the baby — would have to cope. They found ways to pin nappies on babies who had no legs.
They cut short and hemmed the sleeves of babygros to take account of the fact that their baby had no arms, just tiny hands attached directly to its shoulders. They couldn’t get advice anywhere, because, as far as they knew, theirs was the only family visited by these physical distortions.
Their ignorance of other cases was exacerbated by limited communications at the time, by fewer strictures on doctors to report anomalies in newborns.
Thousands of families across Europe had been stricken. None of them knew about the others, and a key reason was that the maker of the drug that had warped the little bodies was denying the truth, hiding the tragedy and making as much money as it possibly could out of its “magic bullet” drug, branded Thalidomide.
No connection between deformed babies and their product. None. Deformities just happen.
Except that in the US, deformities didn’t just happen, for the simple reason that the FDA didn’t licence Thalidomide.
They didn’t manage to totally keep it out of America, because it was being used in drug trials and also coming down from Canada, bringing initial comfort to the mothers who took it and then grief beyond imagining.
But America didn’t experience anything like the devastation Ireland and other countries experienced.
One of the people who joined the deadly dots of Thalidomide in this country was the late Dr John O’Connell, TD.
He fought for the Thalidomide victims with the relentless, over-the-top and sometimes vicious passion the cause needed, and they got compensation. End of story? Not quite.
The day after tomorrow, in Dáil Éireann, Jack Chambers, Fianna Fáil TD., will table a motion to remove the statute of limitations as it applies to those victims. Chambers is arguing that the right to sue again is effectively being taken from the victims by the statute of limitations, and that this is a profound injustice.
Hopefully, all members of the Oireachtas on all sides, will agree, because here’s the reality.
Even with specialised equipment, bought with the not-too-generous compensation provided at the time by Chemie Grunenthal, the maker of Thalidomide, a baby born with its hands emerging from its shoulders was going to have problems.
They found ways around those problems. They were educated, found careers. One even
became a doctor. They married and had children.
But you know what? Doing all of those things by bringing into play muscles never intended for the jobs they were now being asked to do causes damage, over time.
Imagine the damage that would be done to your body if someone strapped one — just one — of your arms to your side and said “Now get on with the rest of your life”.
You might do it, if you had the courage and resilience. But a few decades on, your body is going to say “Enough, already.” It’s going to shut down. Painfully.
That’s what has happened the Thalidomiders. Sure, they got compensation, or their parents did, back in the day.
But now they are in a different place altogether and they need financial help. And that’s not counting the number of people, now in their 60s, who have suffered less horrendous difficulties throughout life and only now have been identified as probable victims of Thalidomide.
That’s why what Jack Chambers is doing matters, and why the Thalidomide survivors (because many of them have died in their middle years, worn out by the struggle) have to hope that this young member of Fianna Fail has even a fraction of the determination of that previous member of Fianna Fáil, Dr John.
It doesn’t just matter on the compensation front or simply in Ireland. It matters because Thalidomide is being relentlessly pushed as a solution to problems other than those of pregnancy, and new babies are being born, in some parts of the world, with the characteristic deformities delivered by the drug.
Harry Evans, former editor of The Sunday Times, which made a massive contribution to exposing the horrors of the drug in the 20th century, maintains that “Fifty years after the deaths and sufferings, the thalidomide tragedy is marked by…the odour of corruption and cover-up.”
The odour of corruption and cover up starts, according to a new investigation that took eight years to complete, with where Thalidomide came from.
It sprang, fully formed (to use a painful irony) onto the post-war European market, covered in research to a degree unusual at that time. Nobody can find out where the research was done. Or by whom.
And there is a sickening suggestion that Chemie Grunenthal may have co-operated with the Nazis as did many major industrialists and chemical companies, and that the elegant research may have been conducted in one of the concentration camps.
Whatever its origins, Thalidomide has undoubtedly earned the moniker of “Cockroach of the Chemical Business: the Pharma offering that will not die”.
In recent years, it has been pushed as having utility in relation to leprosy. One of the Irish experts in leprosy, asked about this, gently suggested that the need to control administration would be paramount.
Then it emerged that the drug had little to offer sufferers of Hansen’s disease, anyway.
Martin Johnson, Raymond Stokes and Tobias Arndt, towards the end of the book they recently published about their Thalidomide research, admit they were astonished to find manufacturers still trying to find ways to market, distribute and seek new users for it in the 21st century.
Their book is a clarion call to stop this and to support those including the group Jack Chambers is fighting for, who want the complete truth about the drug and money to match.
“Thalidomide campaigners are not only concerned about compensation for the survivors that will help them manage the remainder of their lives, although this is clearly very important,” they point out.
“They are also passionate about achieving some justice for all those thalidomide children ‘who never made it,’ as well as for the parents and families who were affected.
Above all, the vast majority of families who had babies damaged by thalidomide have never been recognised or compensated because the great majority of these children died before any of the settlement schemes took effect.”
We often talk of a particular issue as “the one that keeps on giving.” Thalidomide is the flip side of that. Thalidomide is the one that keeps on taking.
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