The member of a New South Wales parliamentary committee into women’s experiences of trauma during pregnancy and birth says it did not sufficiently recognise the experiences of those receiving diagnoses of Down Syndrome and other genetic disorders.
The select committee on birth trauma released its report with four findings and 43 recommendations to ensure people do not suffer “preventable factors” that contribute to distressing and “unacceptable” experiences during pregnancy and childbirth.
Susan Carter MLC said while the report was “an important first step” the committee could have done more to recognise the experience of mothers whose unborn children receive a diagnosis of foetal abnormality such as Down Syndrome.
In its submission, peak body Down Syndrome NSW said more than 90 per cent of pregnancies with a diagnosis of Down syndrome choose to terminate, with the choice often based on medical professionals offering “very outdated information, unrelenting pressure to terminate, and discussions about limitations not possibilities.”
A survey by the organisation in 2021 found around 49 per cent felt pressured to terminate their pregnancies during prenatal diagnosis, and 42 per cent of families were given information which they later found to be false—including the claim that either stillbirth, neonatal death or lifelong dialysis are the only outcomes for a baby with Down Syndrome.
CEO Emily Caska told the committee that families are often told by health professionals that life expectancy is around 10 years whereas it is actually more than 60, an example of the misinformation which it is addressing through its “Congratulations, Not Sorry” education and support program.
“There is a handful of families who say they had a great prenatal experience,” Caska said.
“I would say, at a guess, that 95 per cent or 98 per cent of our members say their prenatal, new baby experience was far from optimal and there is trauma, grief and a lot of residual issues that are coming up from that.”
The committee also heard that women who had declined an abortion after a diagnosis of a disability were still pressed at each subsequent appointment to reconsider their decision.
“It is paradoxical for a society to extend care and a welcome to all people living with a disability, but only after birth and not during pregnancy,” Carter wrote in her dissenting statement.
“We can see that the trauma of being made to feel that the child you are carrying is not welcome, reverberates into the early life of that child, and that family’s experience.
“The report highlights the link between the birth trauma experienced by women and the pressure they have felt from detached or paternalistic clinicians who have pushed or coerced them to undergo a procedure without first asking for consent, or in some cases disregarding their informed consent.
“It is clear that these same coercive and paternalistic attitudes are too often present in the way our health system treats parents who have received a diagnosis of abnormality in their unborn child.
“If we are truly to address all birth trauma, this too must be addressed.”