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From
November 24, 2008

Down’s births increase in a caring Britain

Times journalist Simon Barnes at home in Suffolk with his son Eddie, 5 who has Down's Syndrome

More babies are being born with Down’s syndrome as parents feel increasingly that society is a more welcoming place for children with the condition.

Widespread screening was introduced in 1989, and led to a steady fall in new instances of Down’s syndrome. From 717 babies born with Down’s that year, the total decreased each year, to 594 in 2000.

During the next six years the birth rate for children with Down’s rose by 15 per cent, reaching 749 in 2006, the most recent year for which figures are available from the National Down Syndrome Cytogenetic Register.

A greater number of older mothers is likely to explain much of the increase, but other parents also appear to be more willing to bring up a Down’s child.

Most women who received a prenatal diagnosis of the syndrome chose an abortion, but many are now deciding to give birth. Religious beliefs or strong opposition to abortion account for about a third of such decisions, a survey of Down’s Syndrome Association members has found.

About the same number of parents went ahead because they felt that the life chances of Down’s children were better than before, and attitudes towards them had improved. Life expectancy for people with Down’s has risen to about 60. Children have been integrated widely into mainstream schools, and many adults are now in work.

A quarter of respondents said that they had been swayed because they knew people with Down’s or other disabilities. Most also said that they could count on family and friends for support.

The findings will be broadcast tonight in a BBC Radio 4 documentary, Born with Down’s Syndrome.

Carol Boys, chief executive of the association, had not expected the rise in Down’s syndrome births. “It seems to show that more parents are thinking more carefully before opting for prenatal screening and termination – that being born with Down’s syndrome is being seen in a different light today,” she says on the programme.

“When I and others had our babies it was a very different world . . . Now there is much greater inclusion and acceptance, with mainstream education having a huge role. We think this plays a part in the decisions parents make – there’s even been a baby with Down’s syndrome on EastEnders.”

Down’s is an incurable genetic condition caused by the presence of an extra chromosome, which occurs at conception. Screening for it is routine. A blood test or ultrasound scan will suggest how likely it is that the child will be born with Down’s. In cases where there is thought to be a high risk, women can then be tested by amniocentesis, a more invasive, fluid sampling, where a needle is inserted into the womb, usually between weeks 15 and 20 of pregnancy. Terminations can occur at up to 24 weeks.

Some mothers decide not to be tested. About 40 per cent of diagnoses are made after birth. These account for most new cases. Many diagnoses during pregnancy end in termination.

People with Down’s have learning disabilities of varying severity and the condition often produces distinctive physical characteristics, including a “flat” face and slanting eyes. Half of people with the condition are born with heart problems, and it is also associated with disorders of the hearing and sight.

A rogue chromosome

— Down’s syndrome is a genetic condition that causes delays in physical and intellectual development

— Individuals with Down’s syndrome have 47 chromosomes instead of the usual 46, carrying three copies of chromosome 21 rather than two. Affecting approximately 1 in every 600 live births, it is the most frequently occurring chromosomal disorder in the UK

— The condition is caused by an error in cell division called nondisjunction. This happens at conception and is not related to the behaviour of the mother during pregnancy

— Age is relevant – a woman at the age of 30 has a 1 in 900 chance of giving birth to a Down’s syndrome child, at age 35 it is 1 in 350 and by 45 it is 1 chance in 30

— Diagnosis soon after birth is based on physical attributes that include low muscle tone, a single crease across the palm, slightly flattened facial features and an upward slant to the eyes

— Many children with Down’s syndrome experience health complications, almost half suffering from congenital heart defects among other serious illnesses

Sources : Down’s Syndrome Association, Times Archive


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