Parents fear more disability terminations: ‘We were under immense pressure to have genetic counselling’

Radio NZ News 19 September 2019
Family First Comment: In 2017 the prime minister promised abortion changes would not include removing the gestational limit of 20 weeks for an abortion on the grounds of disability. The Abortion Legislation Bill would allow abortion on the grounds of the woman’s well-being after 20 weeks, on the approval of one health practitioner. Disability groups said changes to the abortion law in Victoria, Australia in 2008 were not as liberal, yet in the following 10 years 1685 abortions were performed after 20 weeks on foetuses with a confirmed or suspected disability. Almost a third of them for Downs Syndrome.

Some parents of children with disabilities say they’re concerned the bill will lead to more abortions on the grounds of disability.

Parents of children with Downs Syndrome say attitudes have been changing since prenatal screening for disability was introduced about 10 years ago, and they’re afraid people with the disability are becoming more of a minority.

Proponents of prenatal screening and the new abortion legislation say it’s all about giving women information, and choice.

… the New Zealand Down Syndrome Association said there needed to be far more respect, and health practitioners needed to be aware of the stigma around Downs Syndrome, and they should provide more information and greater support.

Diane Burnett is the Auckland representative for the association and said eight years ago when she had her daughter Jada, who has Downs Syndrome, the social and medical pressure was intense when she wanted to opt out of the prenatal screening process.

“I didn’t want to have the pressure that medical professionals can put on you to terminate, and the social pressure,” she said.

She said women are just not given the full picture when they find out.

“They are given very medical and clinical information,” she said.

“Figures on heart conditions and health conditions and hearing loss and eyesight problems, and people with Downs Syndrome are not the only people who have those issues.”

“They’re not getting what it is actually like to have a child with Downs Syndrome.”

NZ edging closer to eradication

Women spoken to by Checkpoint said the developments in prenatal screening aimed at detecting disabilities has led to an assumption that women will want to terminate a pregnancy if they find out they are carrying a foetus who might have Downs Syndrome.

They said that has led to a drop in Downs Syndrome births, and said there was a risk New Zealand could edge closer to what has happened in countries such as Iceland, which has almost completely eradicated it.

Iceland has an early prenatal screening process that is not meant to be routine but around 85 percent of pregnant women go through it and almost everyone who receives a positive result for Downs Syndrome decide to terminate.

The New Zealand Down Syndrome Association says the ratio here has dropped from 1 in 750 births to 1 in 1200, though those statistics are disputed.

Ms Price said women needed more support and hope.

“I just find those statistics incredibly heart-breaking,” she said.

“I just feel like the world is going to miss out on something by not having Downs Syndrome present and I would just hate to get to the space where we don’t have people like Eden anymore.

“I feel like New Zealand is kind of on the knife edge now. These diagnoses, when they come, they are so full of fear. There’s that awful crushing moment, of ‘this was not in the plan, what now?’ And somehow I think we need to do more, not in that moment to say ‘you know what that is a horrible problem let’s just get rid of it, but to say actually ‘there’s a lot of hope around this journey still’.

“And I hope that stories like ours can help other women to see and families to see that this life is not a horrible experience, by any stretch.”

….Eden’s mother, Rachel has signed an open letter to the Prime Minister, Jacinda Ardern regarding the bill decriminalising abortion. They say in 2017 the prime minister promised abortion changes would not include removing the gestational limit of 20 weeks for an abortion on the grounds of disability

The Abortion Legislation Bill would allow abortion on the grounds of the woman’s well-being after 20 weeks, on the approval of one health practitioner.

Disability groups said changes to the abortion law in Victoria, Australia in 2008 were not as liberal, yet in the following 10 years 1685 abortions were performed after 20 weeks on foetuses with a confirmed or suspected disability. Almost a third of them for Downs Syndrome.

But Professor Stone said choice was paramount and those who choose to have a Downs Syndrome child shouldn’t be telling everyone else to do the same.
READ MORE: https://www.rnz.co.nz/national/programmes/checkpoint/audio/2018714039/parents-fear-more-disability-terminations-we-were-under-immense-pressure-to-have-genetic-counselling