NSW Birth Trauma Inquiry to hear families of Down Syndrome babies feel pressure to terminate

ABC NEWS (Australia)

The experience of families of children with Down Syndrome will be shared at the next hearing of an NSW parliamentary inquiry into birth trauma. The peak body for Down Syndrome has lodged a submission detailing parents’ distress at how the diagnosis was delivered by medical staff and the subsequent pressure to abort the pregnancy. They are warning the majority of people are given outdated and inaccurate information about the condition.

Transcript

00:00 When Liz Smith found out her daughter Mary would be born with Down's syndrome, she was

00:06 overwhelmed by pressure to terminate the pregnancy.

00:09 I was in tears, devastated, just no one acknowledging that we were pregnant with our child.

00:15 She says her choice to keep Mary was repeatedly questioned.

00:20 We had staff say to us, "Oh, you've decided to take her home with you."

00:24 In 2021, Jenny Lai and Kieran Fisher were told their son Henry would likely have Down's

00:29 syndrome.

00:30 We were presented with a scenario where we thought our baby was going to have a poor

00:35 quality of life.

00:36 Very quickly it turned quite traumatic, quite stressful and quite distressing.

00:41 Around 90% of Down's syndrome pregnancies are terminated after prenatal screening in

00:47 Australia.

00:48 The state's peak body for the condition says some families are being given outdated information.

00:54 Their prenatal and postnatal experiences where they have a diagnosis of Down's syndrome is

00:58 really suboptimal in this country and it is absolutely without a doubt leading to trauma.

01:03 Geneticist Martin Delaticchi consults parents after a Down's syndrome diagnosis.

01:08 It's incredibly important that people make informed decisions and their decisions are

01:14 respected and that pressure is not put on them to go down one path or another.

01:20 The discussion should include the entire spectrum from best case scenario to worst case scenario.

01:26 Beyond that, any decision around what happens next should be a shared decision between the

01:32 clinician and the parents.

01:34 These issues will be put to an upper house inquiry on Monday where Down's Syndrome NSW

01:39 will present its recommendations on how the system can be improved.

01:44 Taking steps to make it easier for parents of the future.

01:47 [BLANK_AUDIO]

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