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Australia Actor Julia Hales, ABC's first TV host who is living with Down syndrome, explores the issue of prenatal testing in new documentary

00:45  18 october  2020
00:45  18 october  2020 Source:   abc.net.au

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Wales is introducing a new non-invasive pre - natal test on the NHS which can tell women with a high chance of giving birth to a baby with Down ' s , Edwards or Patau syndrome if their child has the condition at the 12 week stage. " I think the issue is around that people have a balanced view.

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a couple of people posing for the camera: Julia Hales (right) has worked as an actor and is making her television debut in an ABC documentary on prenatal testing. (ABC TV) © Provided by ABC News Julia Hales (right) has worked as an actor and is making her television debut in an ABC documentary on prenatal testing. (ABC TV)

"I want everyone to know that people with Down syndrome are capable of living in the world and reaching their goals. I want their voices to be heard and to make the world a better place for them." — Actor Julia Hales

Julia Hales is a passionate person, I saw that the moment I met her.

She's a Perth-based actor who co-wrote the award-winning play You Know We Belong Together, which featured at the Perth Festival

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Up to 90% of women who receive Down syndrome diagnoses for their fetuses have abortions . May 2, 2012 Jon Wills Gift: Living Well with Down Syndrome CONFIDENTIAL. 2/15/13. So today science enables what the ethos raties the choice of killing children with Down syndrome before birth.

Children with Down syndrome have multiple malformations and mental impairment because of the presence of extra genetic material from chromosome 21. These studies are more important for children who may participate in contact sports and are indicated in those who are symptomatic.16–19.

I heard about Julia through theatre director Chris Kohn, who was working with her to develop a play called Screens looking at prenatal screening.

It coincided with the Federal Government considering changes to prenatal screening to include a DNA blood test on the Medicare benefits scheme.

This non-invasive prenatal test makes it easier to detect Down syndrome.

It's currently offered privately and costs extra but this proposal would make it widely available and more affordable.

What would that mean for pregnant women and for people living with Down syndrome?

I knew there were some interesting questions to explore in a story for the ABC.

And I thought who better to tell it than someone living with Down syndrome?

Confronting questions

So, I reached out to Julia Hales to see if she would be interested in collaborating and presenting a program on this topic.

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What Tests Check for Down Syndrome During Pregnancy? In this Article. Integrated screening test . For this one , you get two tests taken at different times. The first one is You can get this test starting at 10 weeks, but it’ s mainly used for women who are more likely to have a baby with Down syndrome .

This included people with Down ’ s syndrome . Normansfield is now home to the Down ’ s Syndrome Association, the The article Oldest case of Down ’ s syndrome from medieval France appeared in New Scientist. See the article Who really decoded Down ’ s syndrome ? New Scientist April 2014.

I first contacted her producer, Simone Flavelle, for a chat.

Simone and Julia have worked together for 25 years, with Simone closely supporting and mentoring Julia as an actor since she was 16.

This would be Julia's first television presenting role and she would be the first ABC TV host living with Down syndrome.

Julia was keen to dive into the topic of prenatal testing.

She told me she wanted to speak with a doctor and a woman who'd terminated a foetus with Down syndrome.

She wanted to know how doctors provide pregnant women with the necessary information about having a child with Down syndrome "without scaring mothers and pressuring them to terminate".

I agreed these would be important interviews, but I did worry about how would Julia cope with material that called into question her very existence.

Julia had worked in this space before and was familiar with the institutionalisation of people with Down syndrome that has occurred in Australia.

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All forms of prenatal testing for Down syndrome must be voluntary. A nondirective approach should be used when presenting patients with options for prenatal screening and Adults with Down syndrome have a high prevalence of early Alzheimer' s disease, further impairing cognitive function. 1 .

People who have Down ’ s syndrome are all unique individuals and should be acknowledged as a person first and foremost. It is important to think of the person first Small but increasing numbers of people who have Down ’ s syndrome are leaving home and living with support in their communities.

As recently as the 1980s, parents of a baby born with Down syndrome were often encouraged to relinquish their child to state care.

It was often said to be for the sake of the child and the greater good of the family.

"I want to get rid of the fear around having a child with Down syndrome, to make sure that this [institutionalisation] never happens again," she told me.

The pain of termination

We know that in Australia, over 90 per cent of pregnancies that have a chromosomal abnormality detected end in termination, so we needed to talk to someone about their experience.

We had a great response from our social media call-out.

Families all over Australia came forward with their stories of prenatal screening and three brave women shared their medical termination stories.

Working from Perth because of COVID-19 restrictions, Julia remotely interviewed one of those women, Julie, in Adelaide about her experience, while I watched from Sydney.

I was worried it would be hard for them to make a connection since they couldn't be in the same room but both women were incredibly open and respectful of one another.

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The first several weeks passed without incident. Around the ninth week, I visited my doctor’ s office Instead of the nuchal translucency scan, a blood test through a prenatal genetic testing company was She sat across from us and told us that the quad screen indicated a risk for Down syndrome .

Julie, who'd decided on a termination, told us she wants women to know they have a choice.

"They shouldn't feel ashamed or embarrassed by whatever decision they make," she says.

"They shouldn't let other people influence their decision — you've just got to make the right choices for yourself and your family."

After the interview, Julia was firm in her view.

"If I had a baby with Down syndrome growing inside me I would find out as much as possible about the disability, I would talk to families who have experience and ask a lot of questions," she said.

"Maybe other people have different opinions on this, they could be worried that a baby with Down syndrome would not be good for their family.

"They might be scared of medical problems, or that the baby will learn differently and will be harder to raise.

"But it's their body, and their choice, and I respect that."

My main concern was to get the balance right.

Not make it a contest of rights: women's rights versus the rights of people with a disability or the rights of the unborn child.

We did extensive research and spoke to a wide range of people about their experiences.

It was a genuine quest for openness, seeking out accurate information and meaningful conversation.

Challenges of making the program during a pandemic

There were some significant technical and production challenges in making this documentary.

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Initially, I travelled to Perth to spend a few days filming with Julia.

I drafted questions for Julia and her team to workshop, she added her own and adapted them to her voice.

She was great on location, putting the contributors at ease and responding honestly in interviews.

When we'd finished interviewing obstetrician Professor Steve Robson, he said he felt like he'd been grilled by Leigh Sales!

Julia reflected: "Some questions are hard to ask, and you might not always agree with the answers — but it is important to respect people's own opinions".

Julia travelled to Sydney for a block of filming.

In the middle of the shoot, she made a huge announcement — her play had been invited to the Edinburgh International Festival.

Then coronavirus hit and her play's tour was cancelled and so was the rest of our shoot.

Julia was stuck in Perth and me in Sydney.

I was worried we wouldn't be able to finish the program but Perth-based producer Celia Tait, who'd worked with Julia before, was happy to jump on board.

So, once restrictions lifted, they filmed together in Perth, looping me in via video call from home.

I could talk to Julia and direct the crew from the comfort of my home office.

The other coronavirus complication was remote editing, with editor Philippa Byers working from her home on Sydney's northern beaches and me in the inner west.

We spent hours on Microsoft Teams viewing cuts, solidifying the structure and crafting the story.

It was a big job, balancing Julia's backstory, the personal stories of contributors with the bigger picture ethical questions.

The final piece of the puzzle was the voice-over which Julia recorded from a COVID-safe sound recording booth in ABC Perth, with me listening in from Sydney.

Reading the lines of narration, Julia's acting skills kicked into gear.

She followed my direction, giving me lots of different styles of read to choose for the edit.

By the end of the production process I think we all recognised the importance of creating an opportunity to give Julia a platform.

For many people living with a disability, opportunity is all they need.

And for Julia, this could be the start of her next career move.

"I've been involved in theatre all my life, now I just want to do TV - more hosting [or] a late-night talk show, [interviewing] celebrities and other people living with disabilities - so the whole world is watching [and there is] a bigger audience.''

The Upside of Downs goes to air at 9.30pm, Tuesday, October 20 on ABC TV and iview. October is Down Syndrome Awareness Month.

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usr: 28
This is interesting!