In Praise of Downs Syndrome (continued)

For many people with disabilities , social attitudes are much more of a problem than the impairment itself.If children with Downs Syndrome have equal access to play,leisure and education alongisde other children and adults have opportunities for leisure , education, employment and housing then they can prove that they are as valuable as anyone else.Those who have additional physical or communication disabilities will need personal assistance and additional healthcare. Resources for this should be diverted from research into screening and the cost of so-called therapeutic abortions

The medical implications of screening are very complex .Prenatal genetic screening will never eliminate disability because only a small proportion of disability is genetic. 90% of infant disability is due to social causes such as poverty, disease or accidental and non-accidental injury. Screening is not all that effecient in its attempt to eliminate Downs Syndrome, although it is getting better at it. Ten years ago (1992)an article appeared in the British Medical Journal about the "Bart's "triple screening test. This was offered to women in four London Health Districts to 74% of pregnant women. In the 12,603 pregnancies 25 had Downs Syndrome.Only 12 were identified by the screening procedure. 4.1% had a false positive- that is, 514 mothers experienced the trauma of being advised that they were at risk and should have amniocentesis,but were not carrying a child with Downs Syndrome. Of the 12 babies discovered by amniocentesis ,9 were aborted .There were seven pregnancies with Downs Syndrome in the 26% of mothers who were not screened

There are no figures available about the number of Miscarriages caused by amniocentesis, but with a risk of 1% this would suggest that at least 4 "normal"babies were miscarried as a result of the amniocentesis and possibly another four injured. Is this a price worth paying?Is it worth spending £456,000 to screen 20,000 pregnanicies including the costs of amniocentesis and abortion but not including any expenditure on counselling and accurate information? What information was given to the 9 women who had abortions? In 1993 I visited a Health Services Roadshow, in Central Hall, Westminster.In one display about maternity services ,I saw a leaflet given to expectant mothers about screening, amniocentesis and termination. The only description of Downs Syndrome was the adjective "severely handicapped"with no mention of the fact that most people with Downs Syndrome walk,talk, feed themselves, read, write , swim .....and do lots of things which the word "severe handicap"implied they cannot do.This may have a lot to do with the fact that many medical textbooks and even general health publications base their descriptions on the observations of "patients" in long stay mental handicap hospitals.

Written and verbal information is very patchy.In another BMJ journal Theresa Marteau described research into 102 routine consultations between midwives,obstetricians and pregnant women.Their findings were that over all little information was provided about the test, the condition screened for and the meaning of either positive or negative results.Screening was presented in a way as to encourage them to undergo the test.The main information given was where and when the test would be, but patients were neither encouraged to make choices nor were the limitations of the test mentioned. If Downs Syndrome were detected , some doctors automatically offered appointmemts for amniocentesis with an abortion booked three weeks after the amniocentesis. Undirected counselling was rarely offered and families went through a process of distress , stress and pressure.

My Own Experience

My own experience was that the diagnosis that my second daughter had Downs Syndrome was totally unexpected,I was neither in the "at risk" age band nor was there any family history to suggest it.When I was expecting my third child the situation was quite different .I was over the hill, past 36 and I now had a family history of Down's Syndrome.I did not see a consultatnt at the ante natal check up until I was 12 weeks.He deplored the fact that I had only been seen by junior doctors and that I hadn't had the CVS ( choroinic villus sampling), which I have since learned can cause deformities of the hands and feet.He tried to persuade me to have an amniocentesis but i felt the odds of miscarriage out weighed the 1 in 700 for risk of Downs Syndrome nor would i have contemplated a termination, whatever the results.On a further visit he suggested that because I already had a child with Downs Syndrome the odds were more like 500 or 400 to 1, and offered me the test again.When I refused he asked if I had discussed it with my husband!He was slightly taken aback when I said , yes we had, and that he was of the same mind as me. I was aware of the fact that bringing up two children with Downs Syndrome ( with their sister who doesnt) would be difficult.However my experience of meeting many people with Downs Syndrome had led to a strong conviction that they had as much right to life as any other child,and nothing could justify destroying that life. However, I did feel that my judgment was being questioned ( perhaps he thought my brain had been addled by Hormones)and I do not know what my reaction would have been if I was not as knowledgable as I am now about Downs Syndrome and this had been my first child.

Many people are rightly appalled by the present use of amniocentesis solely for gender so that girl babies can be aborted ,in societies where females have a low status .Many people who deplore this practice find it acceptable to abort handicapped babies because handicapped people have a low status in our society.It is the devaluation of disabled people which is behind much of this research into screening for termination.To some ,disabled people are seen as unnecessary, undesirable and unworthy of resources. A more common attitude is that they are all dependent, immature passive recipients of care.These negative pictures of disability which are based on ignorance and prejudice assume that the characteristics associated with Downs Syndrome should take precendence over life ,ignoring any positive qualities that they have,and denying their humanity.

Finally to return to Dr Soothill. His test us seen as much safer and less invasive than CVS and amniocentesis and involves washing cells from the cervix.This means that all women attending ante natal clinics could be offered it.It works on the assumption that most women would have an abortion. The inference is that Down's Syndrome is comparable to smallpox and should be eradicated completely .What would then be the attitude to those people with Down/s Syndrome who slip through the net ( of death)? What would be attitudes to parents who are irresponsible enough to let their child be born handicapped ? Should we really be moving towards a perfect world where all disabled people are better off dead? Or should we be fighting for a world where people with Downs Syndrome are welcome?