'They said if I didn't abort, I was an idiot': Standing up for Down's
IT OCCURRED so frequently, that Sarah Maroun almost got used to medical professionals asking if she'd abort her child.
But it was the people she didn't know demanding she terminate her unborn child that really stung. People talking about her online.
"They said I should have an abortion and if I chose to go ahead I'm an idiot because I'm draining money from the government," Ms Maroun, 32, from Sydney's south-west tells news.com.au.
Then there was her GP who told Ms Maroun her child was going to have "mongolism". This wasn't years ago, this was 2017.
"I hadn't heard of that term since I was in high school and even then I knew it was a derogatory term only used by bullies. I said to him, 'Do you mean Down's syndrome?'"
When Ms Maroun's second child is born, in about three months, a prenatal screening has revealed it will become one of the roughly 13,000 people in Australia with Down's syndrome.
It's a genetic condition where people are born with 47 rather than 46 chromosomes. People with Down's syndrome can have some characteristic physical features, a level of intellectual disability and health and development challenges. But these challenges can vary immensely. Many people with the condition live independent lives, with an average life expectancy of 60 years old.
Abortion is an option offered to expectant parents of a Down's syndrome child. Indeed, in Iceland, controversially, close to 100 per cent of mothers with a prenatal diagnosis choose to terminate.
But in Australia, parents of children with Down's syndrome are pushing back against the stigma.
A group called T21 Mum Australia (a reference to Trisomy 21, the most common variant of the syndrome) has set up a project whereby professional photographers snap their kids to at their happiest.
"It's to show our kids are loved, beautiful, play in the park and do the same the same things other kids do," says Megan Smith, from Blacktown in Sydney's west, the Assistant Director of T21 Mums.
"I wouldn't want to imagine my life without my daughter Claire. She makes my life better."
It's the kind of positive reinforcement that Kathleen Simpkins, from Traralgon in Victoria, longed for when she was pregnant with her second child.
As her pregnancy progressed she went from a 1 in 800 chance of her child having Downs to just one in three. It was then talk of terminating began.
"It was traumatic having to go in and say, 'no, we don't to kill our child' to every medical appointment." She told news.com.au she suspected some mums she knew were so stressed by similar experiences they now show signs of PTSD.
Ms Simpkins and her partner had decided from the get go, if there was a Down's syndrome diagnosis, aborting was "off the table".
Faced with their determination, she said, their GP was baffled. "He said, are you Christian and we said, 'yes, but that wasn't why', and he said that all the people who don't terminate are Christians and martyrs of parents.
"But we know atheists who have made the same decision".
All the mums news.com.au spoke to said they respected the choice of those parents who did decide to abort following a Down's diagnosis. Ms Smith insisted T21 Mums did not judge.
"Personally, I'm pro-choice," said Ms Maroun. "Anyone who opens up to [T21 Mums] and says they don't know if they will go ahead, we are understanding of that."
But, she said, she feels parents are often aborting without knowing all their options.
Ms Maroun also said her medical professional withheld a parent support pack, produced by Down's Syndrome Australia (DSA), until after she had decided to keep the baby.
"People are on the conveyor belt to abortion because they are not being given the correct information".
The CEO of DSA, Dr Ellen Skladzien, told news.com.au it was "unethical" for families to be provided a screening test for the condition but not given the appropriate information and support to accompany that test.
"In many cases the information provided to families is outdated or focused on a very negative portrayal of what it is like to have a child with Down's syndrome."She said the organisation was working with the Department on Health on beefed up guidelines for prenatal screening and the information provided to parents.
Ms Maroun said that one of the worst times was when she engaged in the online comments section of a news story about Down's and explained why she had decided to keep her baby.
"They said my life would be ruined and I didn't deserve government funding because I knew my child would have Down's syndrome."
It was the other mums who gave her hope.
"I realised my child can have a quality and enjoyment of life, that I would be able to go back to work and many Down's syndrome kids go to mainstream schooling.
"When I saw the pictures of their families, seeing what their kids can do, the concerns in my head were washed away."
In May this year, Briton Charlotte Fien, who has Down's syndrome, addressed the United Nations. She has a boyfriend and a job and spoke of her upset at the seeming goal to eradicate the condition.
"I am not suffering, I am not ill. None of my friends who have Down's syndrome is suffering either," she said.Ms Simpkins' two-year-old daughter Elva is one of the kids to be featured in the T21 Mums photography project.
A new picture and story will be posted on the group's Facebook page every day during October, Down's syndrome awareness month.
"It's reassuring to see all those beautiful children, it helps you think it will be OK."
She says he is deeply troubled about what's happening with Down's in Iceland.
"It's heartbreaking. Knowing my child will grow up and there will be a country that sees it as an achievement that they are eliminating Down's syndrome.
"Down's syndrome is natural, you can't eradicate it, all you can do is stop people with it being born," said Ms Simpkins.
"It's sometimes said it's a kindness [to terminate], to save them from a cruel life, but someone with Down's syndrome will tell you their lives are happy."
Ms Maroun no longer sees the GP who said her child would have "mongolism". And as the weeks tick down to the big day, she says she is now getting the healthcare and the support she needs.
"Some days I hardly think about him having Down's syndrome. It's a complete 180 degree change from the ugly space I was in and that I thought would never end.
"Now I'm confident, comfortable and prepared."