Mothers of children born with Down syndrome say they were put under repeated pressure to terminate their pregnancy and given only worst case scenarios for their baby's chances of a meaningful life.

Key points: Families said they felt pressured into terminating pregnancies

Families said they felt pressured into terminating pregnancies Many felt they weren't given enough information to make a decision

Many felt they weren't given enough information to make a decision The AMA's president said that was "entirely inappropriate"

Lateline has spoken to a number of families who felt they were not supported in their decision to go ahead with pregnancies after receiving a Down syndrome diagnosis.

Kathleen Simpkins, 28, said when testing suggested it was likely her second baby had Down syndrome her GP went into a spin.

"He was basically having a panic attack," she said.

"I think he might even have been shaking when he said to me, 'I'm so glad you came back I've been trying to get hold of you, you've had an abnormal scan and your window for termination is closing'."

Kathleen and Andrew Simpkins with their daughter Elva. ( ABC News: Barbara Miller )

From then on Mrs Simpkins and her husband Andrew from Gippsland in Victoria, said the issue of termination came up at almost every prenatal appointment.

"It was much more about termination than, 'These are the things you might have to deal with down the track'," Mr Simpkins said.

Dee Bird, a single mum to three girls from Victoria's Mornington Peninsula, said the information she initially received about her daughter's chances of survival was grim.

After her first trimester screening she said she was told that her baby "had a less than 1 per cent chance of surviving".

"Everything was worst case scenario and it was ... I think that was the hardest thing to deal with," Ms Bird said.

Dee Bird's daughter Amellia was given a less than 1 per cent chance of surviving. ( ABC News: Barbara Miller )

Despite the poor prognosis she decided to continue with the pregnancy.

"As long as Amellia's heartbeat was strong and she was showing me that she was putting up a fight to beat those odds then I wasn't going to take that away from her," she said.

"I called it her fight."

Amellia was born three years ago and Ms Bird said apart from delays in her speech, her development was not too far behind that of her older sisters at the same age.

'I am heartbroken by the whole experience'

A recent survey of 58 women who went ahead with the pregnancy after being told their baby had Down syndrome found many were upset and traumatised by the care they received.

About 300 babies are born each year with Down syndrome.

One respondent, whose baby was born in 2013, said, "I guess they didn't think my baby was worthy of life given his diagnosis. To this day I am heartbroken by the whole experience".

It is estimated that between 80 and 90 per cent of Australian women given a diagnosis of Down syndrome opt to end the pregnancy.

There has been an increase in the availability of non-invasive tests which can screen for the genetic condition in early pregnancy.

Rebecca Kelly is concerned mothers are not getting enough information. ( ABC News: Barbara Miller )

Rebecca Kelly, the author of the study being published by Down Syndrome Tasmania, said she feared this was leading to increased pressure on women who get a diagnosis of Down syndrome to abort.

Two-thirds of participants said they were offered termination for a second time even after previously declining, and one fifth said they were frequently offered a termination, some until later on in the pregnancy.

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Sixty per cent rated the prenatal care they received after the diagnosis as "poor" or "very poor".

Ms Kelly, herself mother of a five-year-old boy with Down syndrome, said she was most concerned about the way women were counselled before making a decision about whether or not to continue with the pregnancy.

"That's a decision that every woman has to make on their own. The right decision for different women will be a different decision," she said.

"I'm concerned that they are not given the right information that would help support that decision and help them make the right decision for their family."

Family felt decision to continue pregnancy was not supported

The Simpkins said they felt their decision to have Elva was not supported. ( ABC News: Barbara Miller )

The Simpkins family said they were left feeling their decision to continue with the pregnancy, resulting in the birth last year of a daughter, Elva, was not supported.

"The system as a whole doesn't really value the life of children with Down syndrome," Mrs Simpkins said.

"They're seen as very much disposable and dispensable."

Australian Medical Association (AMA) president Michael Gannon said it was unfortunate that people felt pressured into making decisions.

"That is sad and that's entirely inappropriate," he said.

"As is often the case the technology seems to be ahead of the ability of the community, society and often doctors to think about the consequences of it being available."

However, Dr Gannon said if additional information came to light in the course of the pregnancy, for example, "major heart abnormalities", then, he said "it's important ... that that additional information is provided to families and that they're given the opportunity to review their decision-making."

Ms Kelly said she would now like to see an independent study of the prenatal care given to women who get a diagnosis of Down syndrome.

"Obviously what we've done won't be perceived as unbiased because I'm part of this community," she said.

"But I think what we've done is flag that there are problems and we need to look at this system much more closely."