Hayley Goleniowska’s daughter Natalia has Down’s syndrome, which was diagnosed at birth. Here, she shares her cautionary thoughts on antenatal screening for the condition.
Midwives magazine: Issue 4 :: 2014
Before Natalia was born, I unquestioningly believed, as do most prospective parents, that the recommended antenatal tests were for our peace of mind. I naively spouted that we didn’t mind what the sex of the baby was, as long as it was healthy. I refused amniocentesis after an inconclusive nuchal fold scan, because of the risk of miscarriage to a healthy baby.
Looking back at that previous version of myself fi lls me with shame because of my deeprooted belief that a baby with a disability is somehow worth less than a healthy one. But I also see that my prejudice and fear of Down’s syndrome was a product of the way society, and some within the medical profession, view the condition.
Many argue that an antenatal diagnosis enables parents to have time to adjust and prepare for a child with additional needs. They can research and find the support they will need postbirth. New, more sensitive, early blood tests are hailed as safer for mother and baby. But what are we testing for and why?
Abortion is routinely offered as the only route, an assumed decision of the prospective parents of any baby with Down’s syndrome. Instead of counselling and the provision of balanced facts to enable informed decisions, frightened parents are simply statistics in the NHS Fetal Anomaly Screening Programme’s strategy.
Down’s syndrome is effectively being screened out like substandard fruit on a conveyor belt. The tests serve no purpose other than to identify babies with the condition and eradicate them, since there is no cure.
It may be that, had I been told that termination after 24 weeks could be arranged for babies with ‘severe handicaps’, I would have believed that Down’s syndrome was a severe disability rather than a mild to moderate developmental delay.
If my trusted medical team advised it, would I have chosen the route of the 91% (Morris and Springett, 2014) who terminate when they find out that their unborn baby has Down’s syndrome? Had I been off ered a next-day appointment for termination, would I have taken it, in spite of there being no chance to get over our shock, discuss it, or read about or meet a family who had a child with Down’s syndrome?
In truth, I don’t know. The person I was then knew little about Down’s syndrome and had no idea of the independence and achievements possible, once the veil of fear and ignorance is lifted. I had no clue that perfection comes in many forms.
When I refl ect on the £30m that is spent on screening versus a mere £1.8m on Down’s syndrome research (Hansard, 2013), I fear that women who think they are making a free choice to abort are actually being denied the option to keep their baby.
And I wonder how I will one day explain to my grown-up daughter why there are so few others with Down’s syndrome.For the subtext of the current screening programme is that her life is worth a little bit less than those around her.
Blogger, speaker and writer for Downs Side Up. Visit the website at: downssideup.com
Hayley’s eldest daughter Mia, 10, has written Down Side Up’s first publication, I love you Natty, which aims to help other children who become siblings to a child with Down’s syndrome.
Morris JK, Springett A. (2014) The National Down Syndrome Cytogenetic Register for England and Wales: 2012 Annual Report. Queen Mary University of London, Barts and The London School of Medicine and Dentistry: London. See: http://www.binocar.org/content/annrep2012_FINAL.pdf
Hansard. (2013) See: http://www.publications.parliament.uk/pa/cm201314/cmhansrd/cm130603/text/130603w0003.htm#13060413001659 (accessed 1 July 2014).
View Original Post : https://www.rcm.org.uk/midwives/features/screen-test-antenatal-screening-for-downs-syndrome