FOR most of us, Thalidomide is a distant nightmare. For 33 year old Kim Morton of Belfast it is a living legacy. Born not only with out legs, but also with stunted arms and deformed hands and feet, Kim survived into adulthood despite pessimistic medical predictions and now has three children of her own. Of the 4,500 Thalidomide babies who were born in the UK and Ireland in the late 1950s and early 1960s, only 456 survive. All of them are now in their mid 30s and many have married and started families. Kim Morton, who has just written a book telling her life story Kim A True Story is one of them. They have 300 children between them.
At least nine of those children have inherited their parents' Thalidomide induced deformities, according to the Thalidomide Action Group UK. One of those is Kim's third son, Marc, who was born with a deformed, crab like hand with an extra thumb, similar to her own. Fortunately, Marc's hand was corrected with surgery and he now looks perfectly fine, although his apparent inheritance albeit to a milder extent of her deformity left a horrible doubt in Kim's mind. Could her grandchildren and great grandchildren be affected as well?
This is a horrendous prospect and the subject of tense medical controversy. Last autumn at a conference on medical genetics at University College Dublin, Dr William MacBride from Australia claimed that his research with rats had proved that Thalidomide damage could be carried through multiple generations. The mainstream medical establishment disagrees, however, and the truth is that sufficient evidence to prove Dr MacBride's theory does not yet exist.
In most instances the baby who had been born deformed was the opposite sex to the Thalidomide parent," writes Kim. They were also likely to be a third child. Although we have no solid proof, and indeed the medical experts' dispute any possibility of a genetic link, the fact is that the incidence of deformity in our children is very high, not to mention the fact that their deformities are practically identical."
The parents of these affected children have been shy to go public about their situation out of fear that they may lose their benefits from the Thalidomide Trust fund if they do. This is because the is another possible explanation for why the deformities are being carried into a second generation, namely that thalidomide victims whose children inherit their deformities prove thereby that they aren't actually Thalidomide victims victims of a genetic deformity who somehow slipped through, enabling them to claim benefits from the trust fund.
"Those of us who have voiced our fears about second generation babies have been told that if we persist in our claim we will be taken off the list of official Thalidomide victims' currently in receipt of funds, and will receive no further payments," Kim Morton claims.
For Kim's family, the legacy began 33 years ago with one fateful moment in a Belfast hospital where Kim's mother, only a few weeks pregnant, was being treated for a urine infection. Kim heard this story a few weeks ago, when it occurred to her for the first time in her life to ask her mother if she ever felt guilty about taking Thalidomide. Kim herself had never felt angry at her mother, because she did not see that there was anything to be angry about. Although, with the publication of Kim's book, the question was suddenly in the air.
When Kim asked her mother about it, her mother told her that she was offered a sedative to help her sleep but refused to take it. Later, a young nurse came by her bed again and asked her to take the drug but again she refused. A third time, the nurse said that if Kim's mother did not take the drug and go to sleep, the nurse would get into trouble, so Kim's mother succumbed to the pressure to take the drug. That sedative turned out to be Thalidomide, a drug which caused catastrophic deformities in the foetus when taken by women between the second and seventh weeks of pregnancy.
Last month, Kim says her mother confided in her that if only she had had the courage to refuse the drug a third time, Kim would not have been born the way she is. Kim was astonished at her mother's revelation of the guilt she had lived with for so many years. I never thought that my mother felt guilty because I don't hate the way I am. I am who I am. I cannot imagine life with a pair of legs. I would not be me."
Kim writes in her book that she got another taste of her mother's feelings when she was working with the Thalidomide Action Group UK in an attempt to increase the amount of the trust fund on which she and the approximately 460 other surviving Thalidomide victims in the UK and Northern Ireland rely for income. Kim and her mother were with the group's barrister and financial adviser, Jacqueline Perry, discussing the financial matters of the Thalidomide Trust when Ms Perry said. Do you mind if I say something? If the parents had been represented by a legal team of people as devoted and caring as you ... the Thalidomide Action Group would never have needed to be here today."
When Ms Perry was finished, Mum began to cry, she was so embarrassed made a joke to try to relax her, as I knew deep down the whole episode had brought back bad memories of the years of wrangling our parents had gone through."
When, in 1973, the parents had secured the deal with Distillers, which distributed Thalidomide in the UK (the Thalidomide used in Ireland came directly from the German manufacturer which settled separately with the Irish victims), doctors were predicting that most of the surviving Thalidomide victims would not reach adulthood. Some 3,500 of the 4,500 affected babies had died within their first year of life.
Many of the 456 who did live to become adults, feel now that they have to fight for their economic survival. The trust fund was set up at a time when its beneficiaries were thought to be doomed to die young and the idea that many would have dependents didn't seem possible.
Next Monday, a group of Thalidomide victims members of the Thalidomide Action Group UK will visit Dublin to raise awareness among the Irish about their financial problems. They will not, however, be campaigning on behalf of the 27 surviving Irish Thalidomide victims, who have been compensated from a separate source. The British victims are coming to Dublin because Guinness PLC now controls the British Thalidomide Trust, a charitable fund which it inherited when it purchased Distillers in 1986. Distillers was the company which distributed Thalidomide in the UK in the late 1950s and 1960s and in 1973 set up the Pounds 33 million Thalidomide Trust without admission of guilt.
LAST May, Guinness PLC announced that it would support the Thalidomide Trust by setting up annual charitable payments of Pounds 2.5 million for the next 15 years. Guinness has done this not out of any legal obligation, but a sense of moral duty. The surviving British Thalidomide victims get about Pounds 11,000 per year each but they must pay 35 per cent tax on this. The action group wants Guinness to restructure the trust so that they do not have to pay tax on the income, although Guinness feels that this is a matter for the British tax authorities.
Guinness Ireland says that it has decided not to meet the group because the trust fund is the responsibility of Guinness PLC in the UK, not Guinness Ireland. Freddie Astbury, chairman of the group, had wanted to present Guinness Ireland with a copy of Kim's book. Having been refused, he will be trying to meet the Taoiseach, John Bruton or the Tanaiste, Dick Spring.
Kim, meanwhile, is happily remarried, although like many of the Thalidomide victims, she suffers from arthritis and fears that one day she may be seriously disabled by the disease. Thalidomide is being used experimentally to treat arthritis and, along with other Thalidomide victims, she feels that she may someday face the irony of being treated with the very drug which caused her disabilities.
