YOU don’t see many people with Down syndrome around anymore. I used to work in “special needs” schools as well as in respite care, so I got to know children with this condition, their love of life and laughter.
Down syndrome, the most common genetic abnormality, is caused by an extra copy of the 21st chromosome (also known as Trisomy 21). The common physical characteristics include stunted growth, almond-shaped eyes and a flattened nose. Usually there is also an intellectual impairment and some increased risk of medical complications such as cardiac, intestinal and thyroid disease. Some may need significant support, but most will lead independent and ordinary lives.
People with Down syndrome are slowly but surely being eradicated from our society. Because of the common occurrence of this condition, screening tests have been developed over many years such that now it can be determined with 99.5 per cent accuracy, using the new readily available Non-Invasive Prenatal Testing (NIPT), whether an unborn child is likely to be carrying an extra copy of the 21st chromosome.
It is considered routine care to offer a pregnant woman what is known as a “First Trimester Screen” – an ultrasound and blood test are statistically analysed to determine the mother’s risk of her child having several different genetic conditions, including Down syndrome.
What is often not communicated is that the test’s primary purpose is to prenatally determine whether the child is at an increased risk of these conditions so that the pregnant woman can have further testing to confirm this and ultimately proceed to end the pregnancy.
A friend recently went for these tests, unaware of why they were being recommended. As she went for her ultrasound the nurse informed her that if it was found that her baby did have Down syndrome, they would support her through her termination.
My friend was shocked and (already in a hormonal state) declared her confusion as to why this would even be suggested. The nurse simply kept reassuring her that if she did need a termination, it was a simple and painless procedure.
This is not an unusual story, with “Lateline” last year reporting “many women [with a prenatal diagnosis of Down syndrome] were put under repeated pressure to terminate their pregnancies and given only worst-case scenarios for their baby’s chances of a meaningful life”.
Current legal practice is that it is the parents’ choice as to whether to have these screening tests in the first place and following this whether to continue with the pregnancy if a diagnosis of Down syndrome results.
In the medical profession it often seems there is an assumption that all women will want to have these screening tests performed and if their baby is found to have an abnormality, they will want to end the pregnancy.
This perhaps stems from an unspoken belief that allowing a child with such an abnormality to be born would be a burden on the family, their community and the health system at large, and that a child with any detected “imperfection” would not have worth or be wanted.
In Australia about 96 per cent of infants prenatally diagnosed with Down syndrome are terminated. In places such as Iceland it is 100 per cent. It won’t be long before there are no more people with Down syndrome in our society and our world will be poorer for it.
Politicians also need to take part of the responsibility for this tragedy. The sacred cow of choice, echoed just last week by our Chief Minister, inevitably leads to situations such as this. This choice should end with toothbrushes, career decisions and lifestyles, not extend to the extermination of an entire group of people. It is a great irony that although we are providing significant increases in funding and support for people with disabilities through the NDIS, we are at the same time targeting their elimination.
If my wife and I are blessed with another pregnancy, we will not be taking the pre-screening test. Rather we will embrace the opportunity if we have a child with Down syndrome, with the added advantage of being able to see a unique and beautiful face walking down Canberra streets for many years to come. I don’t think they are the ones with the disability, but rather it is often our concept of the “perfect” which is truly disabled.
Nick Jensen is the director of the Lachlan Macquarie Institute, which helps develop leaders in public policy (lmi.org.au).
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