The mother a little boy with Down syndrome was shocked to receive a copy of the notification of his birth in the post. NSW Health collects and publishes statistics on the numbers of babies born in NSW with a number of conditions (including Down syndrome).
Glenda Graban recognises the need to collect information in order to plan services, but she is lobbying for a change to the name of the register (currently called the Birth Defects Register) and to ensure that parents do not receive their copy of the notification unexpectedly in the mail. Her story is told by the Macarthur Chronicle here.
Down Syndrome NSW understands that most parents are not notified in this way, and joins Glenda Graban in calling for NSW Health to make sure that it does not. The national staticstics, collated by the Australian Institute for Health and Welfare, are published as the "Congenital Anomalies" report. We are interested in suggestions for a new name for the register, to take to NSW Health - should it be brought into line with the national report, for excample? Or can we do much better than that? Email firstname.lastname@example.org with your thoughts.