A curse on my BABY

Glenn Harrison and his daughter have identical deformities. His claim that thalidomide is to blame has split the drug’s victims and the medical world. Margarette Driscoll reports

Sunday Times Focus 20 July 1997thalidomide1.jpg (27739 bytes)

Georgina Harrison celebrates her fourth birthday this week. She is a bright, happy little girl who adores her older brothers and is looking forward to starting "big" school in September.

She walks steadily on her artificial feet — her own, severely deformed feet. were amputated just above the ankle soon after birth — and seems supremely confident.

When a boy asked her recently why she had only two fingers on each hand, she shrugged and replied: "It’s just me." Hearing what she , said, her father, Glenn Harrison, felt a mixture of emotions: thankfulness that Georgina had so readily accepted her disabilities, and pain because, one way or another, she had inherited them from him. He feels he is to blame.

Harrison, 36, is one of 458 designated British victims of thalidomide, the anti-sickness drug prescribed to pregnant women between 1958 and 1962 with catastrophic consequences. It caused hideous birth defects, and the plight of the thalidomide children shocked and moved the world.

After a campaign by The Sunday Times, a trust fund was set up by Distillers, the makers of thalidomide (the company has since been taken over by Guinness). It continues to support the original victims, plus a further 24 adults who, after tracing their mothers’ medical records, were able to show that their deformities had been caused by the drug.

There is no provision, however, for the children of thalidomide victims, a situation Harrison is preparing to challenge. He is convinced that just as his sons inherited their facial features from him, his daughter inherited his deformed arms and legs. The question is whether thalidomide is to blame.

THE nightmare prospect of a second generation of thalidomide victims has haunted the families touched by the tragedy for more than a decade, ever since another baby girl was born with deformities identical to her father’s. Thalidomide victims were always told — and had believed that the drug could not possibly harm their children.

Now, among the 380 children born to designated victims, there are 11 with congenital limb defects —two serious and nine mild. This is at least five times the rate among the population at large. Though the deformities are different in each case, they follow a curious pattern. All the boys suffering defects have been born to mothers who were damaged by thalidomide. All the girls have fathers who were affected by the drug.

The medical establishment— and, it must be said, some thalidomide victims — dismiss the idea that the drug’s effects have been passed from one generation to another. Some argue that the high number of children with birth defects suggests the parents’ problems may not have been caused by thalidomide at all, but by a naturally occurring genetic defect that their offspring have inherited. This would mean the parents were wrongly included in the group that received compensation.

To Harrison, such views compound the hurt. "Everyone says, ‘It’s genetic, it’s genetic,’ but if that is the case, how come we passed the medical tests for thalidomide in the first place?" he asks.

He is strongly supported by Bill McBride, an Australian doctor who first alerted the world to the thalidomide scandal and has researched the drug for more than 30 years. Last week McBride published a study concluding that thalidomide could affect DNA, the genetic blueprint, and could therefore replicate its effects in future generations. He is "certain" Georgina’s deformities were caused by thalidomide.

Harrison, a haulage contractor from Peterborough, has requested reports on his daughter’s condition from McBride and Dr Claus Newman, a retired consultant paediatrician who served on a panel set up to assess the original victims.

Harrison intends to present the findings to lawyers acting for Guinness in the hope that they will consider Georgina for compensation. About 50,000 could be at stake, but Harrison’s wife Debbie says the money is irrelevant. "What matters is the truth."

ASSESSING children presented as thalidomide-damaged was always fraught with difficulty. There was no "trademark" deformity that linked every case. Medical records were scant and some had disappeared. The fact that a woman had been prescribed thalidomide did not necessarily mean she had taken it at the critical stage of gestation.

"The evidence varied in every case," said Newman. "Most of it was circumstantial." The lack of clarity meant that children were given the benefit of the doubt. Thalidomide produced some deformities that were known to occur naturally. "We always knew it was possible that we would include some cases which had not been caused by thalidomide. The only way of telling would be when they reproduced."

McBride, however, insists there is no doubt that Glenn and Georgina Harrison were affected by thalidomide. He believes the medical establishment does not want to believe the effect could be passed on.

McBride discovered the link between thalidomide and birth defects in 1961, when three malformed babies were born within six weeks at the Crown Street Women’s Hospital in Sydney, where he worked as an obstetrician. For years he, too, believed the drug would not affect future generations, but on a visit to Britain in 1993 he was asked to visit the Harrisons.

He was horrified. "We only had 35 victims in Australia but I had told them all that they could have children without fear." He wrote to the British Medical Journal saying he believed Georgina and another child were second-generation thalidomide victims. The claim sparked off a controversy that has culminated in the Harrisons fight to win compensation.

Alas for those who want to believe McBride, his credibility is diminished by a chequered career. Four years ago he was struck off the Australian medical register for falsifying the results of an experiment on another drug he suspected was dangerous. McBnde says he was "very foolish" but was "afraid of another thalidomide".

His new research, revealed in the American journal Teratogenesis, Carcinogenesis and Mutagenesis, suggests that thalidomide causes DNA to mutate in rats. But it is published alongside a hefty rebuttal by a German scientist, and Newman is sceptical.

"It is nothing new," he said. "McBride is always claiming to be about to publish something that will change the face of scientific knowledge. I hope he gets the Nobel prize if he does."

THE uncertainty has a human cost, evident in the anguish of the man who fathered the first "second generation" child with deformities. To protect her from prying eyes, he prefers to remain anonymous.

This man was born with shortened arms and three fingers on his left hand, four on the right. His mother’s GP remembered prescribing thalidomide for her and there was no reason to believe the deformity stemmed from any other cause.-

When his daughter was born 12 years ago, there was a profound, double shock. First, her birth defects were even worse than his: her hands were attached to her shoulders, with three fingers on each. Then, a geneticist told him he could not have been a thalidomide victim.

He was thrown into confusion. Central to accepting his own disabilities had been the knowledge that there was a concrete explanation for them.

Suddenly that was taken away. "I didn’t know what to think," he said. "But with the passage of the years, I accepted it. Then I heard about Glenn’s little girl and everything was turned upside down again. It just seemed too much of a coincidence that it had happened to us both."

Nobody, back in the 1960s, predicted that the thalidomide tragedy would linger so long. The victims were not expected to live past 20,..let alone produce children of their own. Now the first grandchild of a thalidomide victim is about to be born.

Mandy Masters, 35, who was born without arms, is to become a grandmother in five weeks when her daughter. Nicola, is due to give birth.

Nicola was born healthy and as far as they know, her baby is fine. Masters was beset by fears she barely dared mention until she accompanied her daughter to her 20-week scan. "The first thing I wanted to know was whether the baby had arms. At that very moment the baby shot its arms up and waved as if to say, ‘Here they are.’ I was so relieved I could have cried."

But David Mason, an art dealer who led the original parents’ campaign after his daughter, Louise, was born without arms and legs, feels that such fears are increased, not alleviated, by the current focus of attention on the second generation.

He warns that some thalidomide victims may end up losing public sympathy by making claims about the drug that may prove unsubstantiated. "1 was assured and I believed it could not be passed on," said Mason "Nothing in the meantime has changed my view."