Big increase in number of Down's pregnancies
Decision of women to have children later in life behind rise
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Rising numbers of women choosing to have children later in life have led to a sharp increase in Down's syndrome pregnancies, research has revealed.
The number of Down's babies conceived has soared by 71 per cent in the last 20 years, as more women delay starting a family until their late thirties or early forties, figures out today show. But improvements in pre-natal screening mean that more of the affected pregnancies are being detected earlier, and most now end in terminations.
As a result, the number of babies born with Down's syndrome has remained fairly level at around 750 a year, although it has fluctuated from year to year by around 20 per cent.
The findings, published in the British Medical Journal, highlight the risks run by older mothers. The proportion of mothers aged over 35 doubled between 1989 and 2006, from 6 per cent to 15 per cent, and the number of those over 40 is rising even faster. The risk of a Down's syndrome pregnancy is 16 times greater in a mother over 40 than in one aged 25.
Joan Morris, professor of medical statistics at Queen Mary, University of London, said: "There has been an enormous shift in the age of mothers. It really has been dramatic. Down's is the commonest chromosomal abnormality in babies and the commonest abnormality of any kind in babies born to mothers over 45."
There were 1,075 Down's syndrome pregnancies in 1989-90, rising to 1,843 in 2007-8. On the basis of increases in maternal age, a 48 per cent rise in Down's births would have been expected, if none had been terminated. In fact, the number of births fell by 1 per cent, because of widespread screening. Professor Morris said: "The proportion of women who had a termination has not changed since 1989, at 92 per cent of those who had an antenatal diagnosis."
All women are offered screening, but the proportion of those over the age of 37 who accept it had remained the same over 20 years at 70 per cent. Professor Morris said: "Twenty years ago we were picking up 70 per cent of Down's syndrome babies and today we are still picking up 70 per cent. Now we have got the option of non-invasive screening tests [blood samples and ultrasound] but there is still a core group of women who don't want screening. There is a proportion who will always say no."
Among women under the age of 37, the proportion of Down's pregnancies detected had risen from 3 per cent to 43 per cent over the same period, because of better screening methods. Professor Morris said: "As the test improves we may get near 70 per cent of babies detected, but I don't think we will make 100 per cent." More research was needed into why women refused screening, she added.
Case study: 'The doctors were straight with me'
*Sarah Burnage was 39 when her fourth child, Harry, was born. She had the same screening tests as for her previous pregnancies, followed by amniocentesis when they showed a one-in-98 risk of Down's syndrome.
"There was quite a lot of pressure on me to accept a termination if the amniocentesis result came back positive," she said. "But when it did, and I asked what the options were, they were very straight with me and didn't push it. I decided to go ahead. I was a single mother working full-time, but my other children were very supportive. That was almost five years ago, and I am still working, as a project manager at Morgan Stanley. I have a new partner now. It is very do-able. Harry goes to mainstream school and does all the same things as his peers, even if he takes a bit longer to learn."
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Comments
My son and daughter-in-law have a 6-month old child with no chromosomal abnormalities that we can see. They refused invasive screening, not least because my daughter-in-law would have been very reluctant to have a termination anyway. Disabled children, she said, can be just as much a part of the family and of society as any other child.
I think she might have wanted a termination for a very seriously handicapped child, but possibly not. Attitudes are changing - ask David Cameron if he wishes that Ivan had never been born.
Most of those mature mothers who refuse screening do so because they already know that it would make no difference to them - they would not terminate the pregnancy anyway.
Forget the modern lifestyle of starting a family when your ready for the knackers yard...
I am the proud father of a lovely boy, who happens to have Down Syndrome. This "chromosomal abnormality" is far from determining what he is or isn't. Medical research in the field seems to operate on the (tacit) assumption that society would somehow be better off if fewer children with Down Syndrome were born. On the contrary, from my experience children with Down Syndrome (not "Down's") have much to contribute to so-called "normal" people's lives, not least to their families' happiness.
It is also to do with the idea of 'unproductivity' and 'expense of caring ' which is the motive behind the screening process, in other words - profit. I am so glad some people are still able to think for themselves.
Micheline Mason
Campaigner for Inclusive Education and Disability Rights
We have seen that people with disabilities - both physical and mental can be helped to live happy and productive lives, or lives as happy and productive as those of others without disabilities. But NOT all can. To take the case around which this article is centred. There are many people who have Down's Syndrome who can live fairly independently, and who are capable of living lives as adults.
This is not always the case, even with a specific condition like Down's, there are substantial variations. The presence of the extra chromosome does not tell a parent-to-be the extent of the damage to the normal functioning of the child.
A couple with a secure income, who are longing for a child may be able to say, "Whatever comes, we will cope with it, and gladly, because we really want this child."
Consider, however, the mother with four children already, who falls pregnant unexpectedly in her forties. Her marriage is rocky and she has a part time, badly paid job and her husband is facing the possibility of redundancy for the second time. She opts for screening and discovers that the baby has got the extra chromosome which means that it will have a degree of disability which may mean that it will need substantial care for the rest of its life.
At that point, such a woman might well consider aborting the child - even if she would not have aborted a child without disabilities. And it would, partly, be a question of money. NOT, however, a question, as Micheline Mason would have us believe, a question of profit.
At an individual level, this is a question of a family having enough to clothe and house not only the disabled child but the other children as well. Here the additional costs of the disabled child may mean the loss of one income permanently. Here the "expense of caring" involves not being able to keep up with the rent, or the mortgage payments. It means struggling to keep up with the costs of school shoes, or clothing the other children from the charity shop.
There are also non-financial considerations, including the welfare of other members of the family. In happy circumstances, a disabled brother or sister means that other siblings learn the need for the family to support each other. They learn tolerance and the need to share. In unhappy circumstances, they learn that the disabled sibling has taken away their parents' attention and sympathy, that their friends won't visit them, that they can't have new clothes and that they get taunted at school.
Doubtless it would be better if we changed society so that the financial burden does not fall so heavily on poor families, and that the families of the disabled, and the disabled themselves do not find themselves excluded. But an individual person, finding themselves pregnant with a baby who may be seriously disabled is going to make their decisions based on the society they are in, not the one they ought to be in.
We, at an individual and communal level need to create a society where the disabled person, and those who care for and support the disabled person are not socially, financially or psychologically excluded.
Whilst that society remains unachieved, we need to understand and support those who feel that they cannot take up the burdens which are currently unavoidable when there is disability in the family.