Monday, 5 December 2011

Prenatal diagnosis: advocating for appropriate information and support

Yesterday, the Sunday Telegraph (Sydney) reprinted in its magazine, an article from the UK Daily Mail, 'I was bullied into aborting my baby' , a mother's account of the pressure she felt to terminate her pregnancy, when her baby was diagnosed prenatally with Down syndrome, 6 years ago.

Her description of how the diagnosis was delivered and the biased information she received are at odds with currently recommended practices about delivering the diagnosis, non-directive support for decision making, and the information that should be made available to parents, all of which is now readily available from several sources, including:

Discussing Down syndrome: a physician's guide published online by the National Down Syndrome Congress (USA)

Brighter Tomorrows published by the Interdisciplinary Human Development Institute, University of Kentucky 

Dr Brian Skotko's research, much of which is freely available through his website.

Our own website's pages on prenatal diagnosis.

Preventing experiences similar to this family's is an important part of the reason that, like Down syndrome family support organisations worldwide, Down Syndrome NSW puts considerable resources into community awareness activities, why many families choose to share their experience through the media (such as The Project's recent report), and why our top priority is accurate, current information for families, the professionals that serve them, and the communities in which they live.

(We did find the mother's comment that she never sees babies with Down syndrome now a little odd - one of the greatest changes that has occurred for people with Down syndrome, including babies, over recent decades is their increased visibility in communities everywhere.) 

Families are welcome to contact the Parent Support Team at Down Syndrome NSW on 02 9841 4401 or support@dsansw.org.au

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