DSA Press Release - Sunday 23rd Nov
Births With Down's Syndrome Increase
The number of babies in England and Wales being born with Down's syndrome has risen to a higher level than in 1989 when serum pre-natal screening was widely introduced -with two births a day according to the latest figures. And in an attempt to understand why more women are opting to go ahead with their pregnancies the Down's Syndrome Association has consulted parent members. The results, released in a Radio 4 documentary, "Born with Down's Syndrome", show that many believe the quality of life for people with Down's syndrome will be better than in the past and that those with Down's syndrome are more accepted in society.
Following the introduction of screening for Down's syndrome in 1989, the number of babies born with the condition steadily fell from 717 to just 594 at the start of this decade. Since 2000 the birth rate has increased, reaching 749 births of children with Down's syndrome by 2006, the latest year for which figures are available. The increase is spread across all age groups. The most recent figures from the National Down's Syndrome Cytogenetic Register suggest that births of children with Down's syndrome have risen by approximately 15 per cent when proportions of all live births in 2000 and in 2006 are compared. Speaking on the BBC documentary "Born with Down's Syndrome", chief executive of the Down's Syndrome Association Carol Boys said: "We are all very surprised by this. It wasn't what any of us working in the field would have anticipated and 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. "When I and others had our babies it was a very different world -those with Down's syndrome were treated very differently. 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."
The Down's Syndrome Association has conducted a consultation with parents opting to continue with their pregnancies. This has been done in conjunction with the BBC and shows that while religious or pro-life beliefs are given in around a third of cases, there are other key factors identified by parents. Initial results show that 25 per cent said they already knew people with Down's syndrome or other disabilities and that had influenced their decision to continue with the pregnancy. Thirty-five per cent said they felt life and society had improved for people with Down's syndrome. Surprisingly almost half of those questioned said they did not think they would have a child with Down's syndrome and that's why they continued. Most respondents said they felt supported by their family and friends. One respondent said: "I don't subscribe to the notion of the 'perfect human being' and found the idea of selecting one child in preference to another abhorrent." Another said: "I already felt a strong sense of responsibility for my unborn child and knew that I would love it and want it regardless of any additional needs it might have. I knew I could count on friends and family for support."
The consultation, which has been compiled to coincide with Monday's documentary, was sent to parent members of the Down's Syndrome Association. It asked those who had received a positive diagnosis and opted to continue with their pregnancies for the reasons behind their decisions. In the documentary "Born with Down's Syndrome" presenter Felicity Finch follows three parents in Leeds who have given birth to babies with Down's syndrome. Frances Dine was 12 weeks pregnant when a scan revealed the condition but she and her husband, Paul, gave little thought to termination: "Things have moved on and babies with Down's syndrome can have a great quality of life," says Frances. "At the back of our minds we did keep alive the possibility that she might not have Down's syndrome but we knew that we would be able to cope if she did -there's so much out there for her. Schools are integrated and there are even actors with Down's syndrome. There's a worker at our local supermarket that has Down's syndrome and we think that it doesn't need to> hold you back."
Their daughter, Erin, is now six months old and they are extremely proud of her. Frances says: "It's been hard and at times we've wondered whether we did the right thing, but now it is getting easier and we love her to bits. When you have a child you usually know what to expect. When you have a baby with Down's syndrome you don't- it's a completely new world. But we are glad to see that other parents think that it needn't be the grim news it once was."
The Down's Syndrome Association consulted 1,000 of its members on why they had decided to continue with their pregnancies after being given a high- risk pre-natal screen for Down's syndrome. The programme "Born with Down's Syndrome" will be broadcast on BBC Radio 4 on Monday November 24th 2008 at 8pm. It is presented by Felicity Finch. Figures from the National Down's Syndrome Cytogenetic Register on the number of births can be found in their 2006 report:
http://www.wolfson.amul.ac.uk/ndscrlreportslN DSCRreport06. pdf
Down's syndrome is a genetic condition caused by the presence of an extra chromosome 21.
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Subject: Ds births on the rise in the UK 
Tue 25 Nov 2008 - 8:42
