Personal Stories

Prospective parents can benefit from hearing how others have navigated prenatal screening decision-making.  A range of personal stories are captured below.

Lived Experience - Prenatal Screening

Julia Hales - The Upside

In this ABC documentary, Julia Hales explores people’s thoughts when they face a decision about having a baby with Down Syndrome and re-examines her experience as she confronts parents’ fears and celebrates the joys of living with Down Syndrome.

 

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Lived Experience

One Screened Every Minute - Podcast

This podcast presents a series of interviews with people across Australia who have received high chance screening results for a range of chromosomal conditions, including Down syndrome. The interviews, which incorporate the experiences of prospective parents who have continued the pregnancy, as well as those who have chosen termination, reveal the immense emotional toil required to navigate decision making.

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Lived Experience

Through the Unexpected

Through the Unexpected works to protect the mental wellbeing of people who receive unexpected news regarding the health, development or genetics of their unborn baby. Through the Unexpected advocates for reduced systemic silence, stigma and shame surrounding this experience. The not for profit organisation aims to ensure people are empowered with high quality, impartial information to make informed choices and are supported for as long as required.

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Lived Experience

Discussion paper on prenatal screening – 2021 survey results

This discussion paper examines the experiences of Australian families over the past decade who have engaged in prenatal screening and highlights examples of quality care; and what is recommended in current policy and guidelines.

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Lived Experience - Down syndrome

Lived Experience - Down syndrome

Down Syndrome Australia

The Down Syndrome Federation is made up of State and Territory associations providing support, information and resources to people with Down syndrome and their families across the country.

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Lived Experience - Down syndrome

Down Syndrome Queensland

You can read many stories of people living with Down syndrome and their families on this site.
Down Syndrome Queensland provides professional, non-directive support to people following high chance screening results and / or a confirmed diagnosis of Down syndrome. Secondary consultation is also available for any health care professional, community service, carer or family member supporting someone who has received unexpected news about their pregnancy.

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Lived Experience - Down syndrome

Canadian Down Syndrome Society

People with Down syndrome of all ages answer many of the frequently asked questions they and their families hear.

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Lived Experience - Down syndrome

NHS (UK)

This site and associated video explain Down syndrome from a lived experience perspective.

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Peer Support Network

Support

Queensland Peer Support Network

Through Down Syndrome Queensland, you can be linked with trained peer supporters and peer leaders across Queensland for 1:1 connection with those with lived experience.

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Get Support

Have you received unexpected news following prenatal screening or simply need advice about your options?

Support through the Down Syndrome Queensland support service is available for any prospective parent, health care professional, community service, carer or family members supporting someone who has received unexpected news about their pregnancy.

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Video Resources