LONDON — A British politician, who has a 9-year-old son with Down syndrome, has condemned as “grotesque” the use of amniocentesis testing during pregnancy. The test is used to “eliminate” the majority of children diagnosed with the condition, he says.
Brian Wilson was a cabinet minister in the previous Labor government of Prime Minister Tony Blair, who won re-election in early June and consequently will head Britain's government for a second term. Shortly before the election campaign began this spring, Wilson told the London Telegraph, “I find it grotesque that 95% of Down children are eliminated as a result of amniocentesis. And to achieve the assumed social good, four times as many non-Down kids are not born.”
Wilson, 52, has three children: Mairi, 12, Eoin, 9 and Ronan, 4. Eoin has Down syndrome and attends a special school near the family home in Glasgow.
Wilson's comments came just before a British hospital announced research that enables a “fast track” test for Down syndrome. Most of the children diagnosed with the genetic condition as a result of this new test have been aborted.
And the comments were followed by Wilson's own Labor Government announcing that all pregnant women will be offered tests for Down syndrome by 2004, along with tests for syphilis, HIV, hepatitis and rubella.
Pro-life campaigners are waging a constant campaign against what they call a “search and destroy mission” against the handicapped.
But it is not just the pro-life lobby who is concerned.
The U.K. Down's Syndrome Association, which has generally avoided lining up with pro-lifers, has stated, “The Down's Syndrome Association and the parents it represents does not believe that having a baby with Down syndrome is a reason to terminate a pregnancy, however it is a matter for the parents to decide.”
Said spokeswoman Sarah Waights, “It does seem as if doctors put pressure on couples to have a termination. We believe this is due to ignorance and would change if there was better training for doctors.”
Wilson's comments also criticized Britain's free National Health Service for discriminating against Down syndrome children after birth.
The former minister told the Telegraph that the use of abortion to avoid the risk of having a Down child meant those who survived were deprived of proper care.
Some 40,000 women have an amniocentesis test each year to check for the chromosomal abnormality that indicates Down. The test, which involves drawing amniotic fluid from the uterus, carries a risk of miscarriage. A recent study at London's St. Bartholomew's hospital showed that while tests identified 100 Down cases each year, 400 healthy fetuses miscarried as a result.
There are about 1,800 abortions on Down babies out of an approximate total of 175,000 abortions in the United Kingdom.
And the number looks certain to increase with the mid-May announcement by Harold Wood Hospital in Romford, Essex, about a new screening technique aimed at identifying unborn babies with Down syndrome.
The technique offers women the chance to abort their baby within the first 12 weeks of pregnancy, two months earlier than with conventional screening. About 50 unborn Down children identified at the hospital were aborted.
Faced with these developments, pro-life medical personnel are promoting positive alternatives to abortion. One key part of their strategy has been the formation of the Lejeune Center in London, with regional outlets elsewhere in Britain, to help parents with Down syndrome children.
The first Lejeune Clinic was founded in Paris by the late Professor Jerome Lejeune, the French geneticist who discovered that an extra chromo-some causes Down syndrome. Pope John Paul II prayed at his tomb during his 1997 World Youth Day visit to France.
Lejeune's principles of treatment, which emphatically reject anything that diminishes the full human dignity of those with Down syndrome, include the importance of giving folic acid to stop further retardation and the use of various amino acids to help treat the condition.
The U.K. clinic was established in 1995 to implement and enhance Lejeune's principles, as little research worldwide had taken place into Down syndrome since his death in 1994.
Catholic Dr. Tony Cole, one of five pediatricians working with the London clinic, said, “We have treated and helped more than 100 children in the last few years and our work is growing. Our problem is that demand for our services is greater than our resources — we are a charity where every penny is vital. Parents are grateful for help.”
The clinic gives support to parents and their children, the most high-profile being Dominic Lawson, editor of The Sunday Telegraph national newspaper, and his wife Rosa. Their Down daughter Domenica was the god-daughter of the late Princess Diana.
But Cole, who is former Master of the Guild of Catholic Doctors, admits that before the baby is born is where the real business of changing social attitudes must occur.
Said Cole, “It is not just doctors who need to change their attitudes, we also have to work on the midwives who are also key players in this problem.”
The Guild of Catholic Doctors has produced a form for parents to hand to doctors and midwives. It states that the parents do not want pre-natal tests that are unnecessary for the care of the mother's pregnancy or the baby's health.
Alex Ross, spokesman for the U.K. Department of Health, denied that Down children in the womb were targeted for termination.
Said Ross, “I do not think that is true. We are providing a lot more information to make sure women can make an informed choice.”
Ross also denied the charges from the Down's Syndrome Association that doctors adopted a negative approach to couples who were expecting Down babies.
But Labor politician Wilson told the Telegraph that Britain is a hostile environment for people like his son Eoin.
Said Wilson, “There is a double jeopardy for the few who do make it into the world, because there are so few of them, and less pressure to do very much for them. In a civilized society, there should be a Rolls-Royce service for the small number of children who have these requirements, and I don't think that's the case.”
Paul Burnell writes from Manchester, England.