Local mother Claire Martin believes providing women whose babies are diagnosed with Down Syndrome access to accurate information and pre-natal support will save lives.
Mrs Martin told the Argus that she struggled to find information and support following the confirmation of her baby’s diagnosis with the condition 13 weeks along.
She turned to the internet after being left confused by health professionals who she said urged her to terminate the pregnancy.
"At the moment, worldwide, the birth rates of children with down syndrome is 1/800 whereas in Australia it's 1/1200 because we have such high termination rates," Mrs Martin said.
"I don't have an issue with mums going down that path - it's not about pro-choice or pro-life, I'm very pro-choice.
"It's about pro-ethical diagnosis delivery and pro-support and pro-accurate up-to-date information.
"There is no consistent information and there is no pre-natal support at all.
"It's 2017 and I was left to find information on Facebook and Google."
Luckily, she came across T21 Mum Network, a Facebook support group comprising women in a similar position.
The group helped Mrs Martin through her pregnancy, assisting her with information and practical support.
More than 22 months since the birth of her son Xavier she continues her involvement with the group to pay it forward, share her experiences and help others through what can be a daunting time.
Claire's experiences: finding out
Mrs Martin discovered Xavier might have the genetic condition when a dating scan revealed a fold on the back of his neck, a sign of a chromosomal abnormality.
"It was really unexpected for me, I was 25 and I assumed it normally happens to older women which is not true at all," she said.
"I had a high chance for three different conditions - Trisomy 21, Trisomy 18 and Trisomy 13.
"They say Trisomy 18 and 13 aren't compatible with life but I know a few Trisomy 18 babies who are alive."
The next step for the young mother was to undergo an amneocentisis.
"It was a very hard time in my pregnancy," Mrs Martin said.
"It was horrible, they didn't give me any pain relief either so I feel kind of staunch.
"They put a needle in my stomach and drained out the fluid, and from that they could see his chromosomal pattern."
Mrs Martin was at work when the doctor called her in to deliver the diagnosis.
"He goes 'the tests have come back and it does show your baby has Down Syndrome," she said.
"My husband (Ben) and I, I looked at him and he looked at me, then he started crying and I started crying.
"We were all just crying and I just said what do I do.
"I didn't know what to actually do in that moment.
"He (the doctor) said just go home and be with people that you love, which was a nice way of saying it.
"I mean we were happy and thankful that our child didn't have Trisomy 13 because that would have been an instant death sentence but in another way we were like ‘oh my god, our baby has Down Syndrome and it didn't make sense because I was 25 and there was no family history’.
"We have now learnt that family history has nothing to do with it.
"It's just a random thing that happens at conception, there's nothing you can do to prevent it."
As a consequence of the diagnosis Mrs Martin's pregnancy immediately shifted to high-risk and she would rarely see her original GP thereafter.
"I had lots of different doctors at lots of different centres and unfortunately they weren't all as nice as him," she said.
Mrs Martin says at her first appointment with a specialist she didn’t receive any information, just a time-frame for termination and assurance that she could still terminate after 20 weeks but lawyers would need to be involved.
"From there, literally every appointment that I went to they'd say are you sure you don't want to terminate and I'd have to justify why I didn't.
"And to be honest, and this really hard to even say, but we didn't even know what we wanted to do.
"We didn't know if we wanted to go down that path or not.
"We were actually very open to the option of terminating because it was the way everyone was pushing us.
"Every time I would say no they would be like 'are you sure? But why?'
"Scrunch up their faces and look at me like I was stupid.
"Throughout the months I was told that my husband would leave me.
"I was told that I would lose my job, that it wasn't just the quality of life of my baby but would ruin the quality of life of my existing children as well.
"I even had someone say to me, if it were a dog what would you do.
"That sticks with me because this isn't a dog, it's not an animal, it's not a goldfish, you can't flush it down the toilet.
"This is my baby that was such a wanted baby."
The couple spent three years trying to conceive battling through four miscarriages.
"We spent so long trying to conceive and I tried every trick in the book," Mrs Martin said.
"We had actually given up hope.
"We were saving up for IVF and thought let's just focus on our careers.
"I'd had countless pregnancy tests and always be let down.
"So when we got to the pregnancy test stage with Xavier, I was just so excited to be having him and we got to the 12-week mark and were like yes we can announce it.
"Then at 13 weeks it all came crashing down.”
Mrs Martin says she wanted to be fully informed before making a decision.
"We were at the hospital to find out about the process of termination.
"I wanted to know what we were going to do and how we would go about it.
"i wanted to know everything.
"We sat there and discussed every little detail.
"We were talking about what we were going to do with our baby's ashes.
"It was horrible and I was just numb, sitting there going through the process."
While at a mediacl facility, Mrs Martin’s husband took her outside for a breath of fresh air.
"He looked at me and said 'what are we doing?'," she said.
"I was like, I don't know, I don't know what we're doing, it was just the process, it was the normal thing to do.
"And he said 'we can't kill our baby', and we walked off and haven't looked back.
"Here we are 18 months later and I wouldn't have him any other way.
"I wouldn't change him at all.
'I won't lie, we have had extra medical appointments and we have had a few more health problems than a typical child would but not a single one of them makes me go ‘oh he's got such a poor quality of life’.
"It has made his siblings' lives better.
"He's the glue that holds the family together.”
Mrs Martin says contrary to popular belief Xavier and other people with Down Syndrome can expect to live full and rewarding lives.
"When people think of someone with Down Syndrome they think of someone that is not capable of living a typical life," she said.
"They think that they are dribbling and can't take care of themselves, and it's not true at all.
"There is so much therapy and so many services and interventions available now that our children are living very normal lives, even driving cars.
"There's one who can conduct an orchestra and models, and other occupations.
"I think that my son is going to be just as capable as any other.
"He can be anything he wants.
"I also find when people see I have a child with Down Syndrome they look at me sympathetically.
"I always tell them, I'm fine, so is my baby.
"I don't need sympathy.
"There is nothing to be sympathetic about.
"There is seriously nothing to be sorry about."
March 21 is World Down Syndrome Awareness Day and the T21 Mums are all getting matching tattoos symbolising their remarkable journeys.
“The tattoo design means an arrow must be pulled back in order to shoot forward. This is something many of us have felt when hit by an unexpected diagnosis for our child. This action is preparing us to shoot forward to an amazing future with our incredible kids. The Roman numerals for 21 are included to represent the 21st chromosome and the dots at either end represent trisomy. The rings in the centre represent the connections made between families in our community, while the overlapping triangles represent strength and resilience,” Mrs Martin said.
Last October was Down Syndrome Awareness Month and T21 Mum Network shared a video with the aim of breaking down the stigma associated with Down Syndrome and celebrating the many gifts of their children.
"It was our chance to show how amazing our children are but I'd love to spread awareness all the time," Mrs Martin said.
"Every day is Down Syndrome Awareness Day for me."
Xavier Martin featured in the clip and local photographers Jennifer Vince and Bianca Moore joined others Australia-wide in donating their time.
"Those two local photographers did an amazing job," Mrs Martin said.
"I think the video is going to make a massive change in the negative stigma associated with Down Syndrome and also in pre-natal support.
"I think it could literally save a life, I really do."