pregnancy

'I have Fetal Alcohol Spectrum Disorder. This is what I wish people knew.'

"It's a struggle every day just maintaining my routine and health. For example, I have sensory issues, so if you're talking quite loudly around me I'm likely to get overwhelmed and my ability to process information can be quite shaky.

"Some days are worse than others, and if any problems or barriers come up, which often can be very simple, that will halt me in my tracks. It becomes tricky, because asking for understanding to manage such simple barriers can make me come across as difficult, high maintenance or spoilt. But I am not trying to be any of those things, I just have a hidden disability and certain things can really make or break my day."

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When Jessica Birch says "make or break" she really means it. 

If these accommodations aren't made, she could be in bed for days recovering. 

The 34-year-old has Fetal Alcohol Spectrum Disorder (FASD), a lifelong, permanent and debilitating disorder which is caused when alcohol crosses the placenta to the developing baby during pregnancy.

WATCH: Jessica speaking to FARE, The Foundation for Alcohol Research and Education. Post continues after video.


Video via FARE.

Although FASD is more common than autism, ADD and cerebral palsy combined, most Australians aren't well-versed in what FASD is. Because although it's a complex physical brain impairment that significantly impacts the body's systems, it often goes undetected.

It's invisible. Which is exactly the problem. 

"I don't look like I have a disability so the accommodations I need are deeply undervalued," Jessica told Mamamia.

"Having a hidden disability means people try to be supportive, but it becomes quite clear when I try to explain [what I need] that they don't really understand. 

"What ends up happening is they tend to say things that undermine the severity of what I am telling them. Or how deeply it affects my life. It becomes quite difficult to interact." 

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Jessica's many symptoms include chronic fatigue, a sleep disorder, heart rate, digestion, and sweat glands that function erratically and problems with her autonomic nervous system. But the reality of what that actually looks like in everyday life, is where people struggle to understand.

Jessica's disability is "invisible" which often means people underestimate the severity of her reality. Image: Supplied. 

"I need a lot of brainpower to perform basic tasks. If someone is trying to speak to me while I am making a coffee, for example, it becomes very difficult to make the coffee. I can't respond to someone and process what they are saying, if I am doing something else," Jessica explained. 

"I can't drink water from a water bottle and walk at the same time. Sometimes it may take 20 seconds for me to actually register what is being said to me," she added.

The longer Jessica is 'switched on' the deeper her fatigue and the longer her recovery. So she typically needs at least a day to recover if she spends just one day using her computer - even if she is doing an activity she loves. 

"Or if I am faced with a common workplace constraint like a scheduling issue, I often can't see a way around it even if the answer is really simple," she said. 

It affects Jessica's entire body, physically and cognitively, and has resulted in a lot of heartbreak, an anxiety disorder and clinical depression, as she grieves the life and milestones that have passed her by.

She hasn't been able to develop a career, and hasn't been able to travel alone, learn to drive, has spent years with limited friends or support, and spent most of her 20s barely surviving as she "struggled to adult". 

"I didn't understand why things were so hard, so the more independent I became the more difficult it became and the unhappier I was," she told Mamamia.

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Jessica says she grieves the career, goals, friends and life she has missed out on because of FASD. Image: Supplied.

Jessica didn't get an official FASD diagnosis until March 2019, just before her 33rd birthday, although she has always known her birth story.

Her mum was 16 when she had her, and consumed alcohol during her first trimester not realising she was pregnant. As soon as she knew, she stopped.

“When I came to understand that my struggles were not because I was just fundamentally lacking – that it was FASD – I was able to lift the burdens off my shoulders and place them squarely on the damage that was caused by my exposure to alcohol – which only happened because my mother didn’t know she was pregnant.”

Now, together, Jessica and her mum want to empower women to feel comfortable about seeking information about FASD, alcohol and pregnancy.

“We say a lot in my family, ‘when you know better, you can do better’, and when we understood that FASD was the problem, things really started to improve.”

Jessica wants women to understand that drinking around pregnancy is dangerous, not only potentially causing FASD, but also miscarriage, stillbirth, and low birth weight and a range of developmental problems.

Her hope is for women to have greater mindfulness around their pregnancy choices and this includes having a realistic understanding of what a child’s life could be like if exposed to alcohol in utero.

Right now FARE and a number of other health and community organisations are urging the government to approve a really visible and clear pregnancy warning, to be a part of a new label for every alcohol product sold in Australia.

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“I think that a clear warning label will be integral in deterring people from taking that drink in the moment.

"One way to empower them to make that choice is to help them understand the sort of life their child could have if alcohol causes harm when they are pregnant or trying to conceive," Jessica told Mamamia.

The food safety regulator Food Standards Australia New Zealand (FSANZ), says the cost of implementing a pregnancy health warning label will be significantly less than the ongoing human and financial burden of FASD within the community, but for Jessica, she hopes they will also help to spark a bigger conversation.

"Spectrum disorders such as autism garner a lot of attention in mainstream media, but no one is talking about FASD and there's simply no social consciousness about it in Australia. This is a huge problem. I want people to know that FASD affects an estimated 2 to 5 per cent of the population – quite literally hundreds of thousands of Australians suffering without support.

"My life has improved greatly [since my diagnosis]. Understanding FASD has allowed me to navigate my life in a way where I feel my hopes and dreams can finally be realised - there is joy and hope and promise that I never had before," Jessica told Mamamia.

Feature image: Supplied.

Jessica invites you to join her in signing an open letter to ministers about the importance of a clear, visible health warning labels on alcohol products. You can find it here.

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