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Down’s Syndrome numbers don’t add up
Are more women choosing to have a Down’s Syndrome baby despite learning from a prenatal scan they are carrying a child with the condition?
The Down’s Syndrome Association charity believes this is the case. Its conclusion has been widely followed in press reports, including in the Daily Mail, Independent and the Times.
But research data published in response by the National Down Syndrome Cytogenetic Register (NDSCR) in London suggests otherwise. It says that the rate of terminations of unborn Down’s Syndrome babies has remained constant since prenatal screening became widely available in 1989.
The Down’s Syndrome Association says its help desk has been receiving an average of two calls a week from expectant mothers who have received a positive scan for the condition who say they are continuing their pregnancy, a much higher rate than two to three years ago.
And it points to figures from the NDSCR showing that more Down’s Syndrome babies are now being born in England and Wales than before the start of widespread prenatal screening — there were 749 births in 2006, the latest year figures are available, compared to 717 in 1989 and a low of 563 in 1995.
The number of Down’s Syndrome births as a proportion of all live births has also increased by around 15 percent since 2000.
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The Wall
I am interested to see the NDSCR figures produced in response to this highly publicised DSA survey.A further element that particularly concerns me is the figure, variously reported online as ´almost a fifth´ or ´almost a half´ of those questioned who cited ´thinking that the baby was not going to have Down syndrome´ as a reason to continue with the pregnancy. Whilst this many be a manifestion of denial, which may be a potent component of coping with such a situation, surely this raises a major question about the degree/effectiveness of counselling that these women and their partners received?For pregnancies that had had cytogenetic confirmation of trisomy 21 (by amniocentesis, for example), the chances of the baby not having trisomy 21, i.e. Down syndrome, were exceptionally small indeed. (In contrast, in the case of people who chose not to have any invasive prenatal testing, where the likelihood of Down syndrome was suggested on scan findings only, there would indeed still have been significant uncertainty.)Down syndrome conception rates are higher as more women over the age of 35 are having children. These higher numbers of people requiring counselling in a pregnancy likely to be affected by Down syndrome must be addressed at a population level.The DSA´s view that Down syndrome is not an indication for termination of pregnancy is entirely in keeping with their purpose of promoting the rights and aspirations of people with Down syndrome and their families. Lobbying for appropriate counselling to be available for every pregnancy in which Down syndrome is suspected is compatible with this, and therefore it seems that this should be a priority area.