Down Syndrome NSW will tell the Birth Trauma Inquiry parents of children with the condition are being traumatised by their prenatal experiences.The organisation will make recommendations to the inquiry's fifth hearing in Sydney on Monday.She said the assumption made by the medical professionals treating her was that she would terminate her pregnancy.
A survey of 300 families by the organisation in 2021 found around 49 per cent felt pressured to terminate their pregnancies during prenatal diagnosis."We know from the vast majority of our families that their prenatal and postnatal experiences where they have a diagnosis of Down syndrome are really suboptimal in this country," Down Syndrome NSW CEO Emily Caska said.
Jenny Ly and Keiran Fisher found out Henry would be born with Down syndrome after their 12-week scan and a blood test. This results in some level of intellectual disability and a significantly elevated risk of heart conditions and other medical complications.Clinical geneticist with the Murdoch Children's Research Institute Professor Martin Delatycki said clinicians had a duty to inform parents of all possible medical complications.
"The discussion should include the entire spectrum from the best-case scenario to the worst-case scenario," Dr Khot said.