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During her pregnancy, Sophie drank occasionally. At 14, her son received a diagnosis.

From the moment Sophie found out she was pregnant, she was excited for the future that lay ahead.

She was 30, and this was going to be her first child. 

"I found out I was pregnant at about the six-week mark, and I hadn't expected to be pregnant so soon. I was a social drinker naturally, so my drinking habits in those first six weeks would have been a few drinks with a meal on Friday and Saturday nights," she tells Mamamia

Once her pregnancy was confirmed, Sophie went to her doctor and got across all the relevant pregnancy information, which included looking at the guidelines for alcohol intake while pregnant

"The guidelines back then were that it was safe to have up to two standard drinks on one occasion, or either around seven standard drinks per week but not exceed that. So for the rest of my pregnancy, I had one standard drink each week on a Friday night, and I made my husband check that it was definitely only one standard drink. I figured we were being cautious."

Watch: foetal alcohol spectrum disorder discussed on Australian Story. Post continues below.


Video via ABC.

In the 2001 guidelines from the National Health and Medical Research Council (NHMRC), women who were "pregnant or might soon become pregnant" were advised to consider not drinking. But in these guidelines, it was also said they could safely have seven standard drinks over a week.

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This was changed from the 2009 guidelines onward, which stated "for women who are pregnant, are planning a pregnancy or are breastfeeding not drinking is the safest option".

It was from this point that the recommendations from a leading body were far clearer. 

Sophie, along with many other parents, wish these clear guidelines had been reinforced far sooner.

"Overall the pregnancy was okay, and so was the birth. The first few years were quite hard though," she notes.

"He was very fussy, had reflux, seemed to get a lot of ear infections, pains in his stomach and was startled easily by light and sound. He also didn't sleep very well - he didn't sleep for more than about 40-minute periods for quite a few years actually."

Sophie's son managed to meet all of his developmental milestones in the young years. He had good eye contact and easily engaged with others. 

It was at school age, where certain signs began to emerge. 

Teachers had noticed major gaps in his learning. Sophie and her husband were fortunately able to organise extra programs and tutoring for him. But it was still proving challenging.

"I had some familiarity with foetal alcohol spectrum disorder, but what I understood about it was just that it impacted children whose mothers were drinking at high levels during pregnancy. I didn't believe I was, or could even be, in that category."

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After lots of tests, visits with clinicians, and a long search for answers and clarity, Sophie and her husband were told their 14-year-old son had foetal alcohol spectrum disorder (FASD).

FASD is when the brain is damaged during the growth of the fetus amid a pregnancy. The disorder can manifest itself as a number of different conditions, and these can impact a number of different body systems. It's variable, depending on the amount of alcohol consumed during pregnancy, and the sensitivity of the fetus.

There can be some physical differences, as well as predominantly behavioural differences. This can include ADHD, learning difficulties, intellectual disability, sleep problems, developmental delays, low body weight and more, according to medical experts. 

Sophie says most of her son's challenges are around learning and executive functioning. But he thrives at being hands-on in things, and he recently left school to get into a work-based program instead.

"When we got the diagnosis, I think we actually felt validated. We had been looking everywhere for answers to try and support him as best we could. Now we have the background, we can find the right approach to accommodating his brain-based differences," she notes.

Currently, Sophie's son is in his late teens and he is expecting a child with his girlfriend. 

While Sophie has no concerns on how they will care for the baby, certain parts of her son's condition don't allow for things like forward thinking. Scenarios such as making sure there are enough nappies, or making sure they sterilise bottles are now front of mind.

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"In the early days of finding out the news, we were very concerned, and we had tried to put lots of things in place so there wouldn't be a pregnancy. But the baby will be here in a few weeks, and we're so proud of how he has handled it," Sophie tells Mamamia

"We have the support all organised and we've made arrangements at our home. But there is an added layer of complexity."

Dr Daniel Golshevsky is a Melbourne-based paediatrician and father of three. He was also the former Chief Resident Medical Officer at The Royal Children's Hospital in Melbourne.

On his podcast Dr Golly and the Experts, he spoke with Sophie about her family's story and FASD.

"It was absolutely astonishing listening to Sophie, because as you can imagine the level of maternal guilt is through the roof with this condition. To have someone who has the courage to talk about it, that does amazing things for other families out there," he notes.

And it certainly resonated with other parents, Dr Golshevsky saying he has received numerous private messages from other families thankful to hear their story heard.

Speaking with Mamamia, Dr Golshevsky says FASD can be difficult to diagnose in patients.

"Many children have slow growth, and many children have ADHD. It's often hard to pinpoint FASD in comparison, plus it can be sensitive as we don't want to be apportioning blame to mothers or interrogating their alcohol intake when they were pregnant.

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"It's a very touchy topic, and alcohol intake during pregnancy hasn't always had very clear guidelines like it does now."

What Dr Golshevsky wants people to know is this - blame has no place in this discussion. 

"Speaking about this subject is about educating people, because shame and guilt can be toxic. Blame only serves to damage," he says.

"I think as we approach the festive season as well - and more people are likely to be drinking given it's a celebratory time - we need to all know about FASD if pregnancy is on the cards. The safest advice in Australia is to abstain from drinking entirely."

Sophie agrees. 

"We need to reduce the stigma and we need to change that story. I just wish the amended guidelines were there many years ago. I just want other parents out there who have lived experience of FASD to know support is out there. The less judgement, shame and blame, the better."

To hear more of Sophie's story, you can listen to her podcast interview with Dr Golshevsky here

NOFASD Australia is a family-focused organisation and is the bridge linking those with lived experience with researchers and clinicians. For information you can visit their website, for support you can call them on 1800 860 613.

Sophie has omitted her last name for privacy reasons. Her identity is known to Mamamia.

Feature Image: Getty.