Recent studies show that up to 60 percent of Australian women have consumed alcohol to some degree during pregnancy. Elizabeth Elliott knows only too well the dangers of Fetal Alcohol Spectrum Disorder, and her advice is clear: party over.
The warning poster was funded by the alcohol industry as part of a harm minimisation campaign. The big print message wasn’t exactly assertive, but it was fine: “It’s safest not to drink when pregnant.” The problem was the small print.
On 2400 posters to be distributed to hospitals, GP clinics and health groups, the small print said, “It’s not known if alcohol is safe to drink when pregnant.”
Saying that the science isn’t settled is a classic gambit used by tobacco companies and climate change deniers, and now, apparently, the alcohol industry. Elizabeth Elliott (MD '92 MBBS '80 MPhilPHlth '09) bristles at the very idea. “Fetal Alcohol Spectrum Disorder (FASD) entered the mainstream medical literature 40 years ago,” she says. “It is a very real disability affecting babies around the world. Wouldn’t you think they’d have got the message by now?”
Warmly engaging but direct, Elliott also has a quality of quiet patience that has no doubt helped in her many battles. The message she brings is simple: don’t drink alcohol if you’re pregnant. Getting it heard and understood has been much harder, with Elliott devoting 20 years to the task.
The uncomfortable truth for a booze-loving nation is that alcohol easily passes across the placenta, so an unborn child will share every alcoholic drink its mother consumes. More often than most people realise, the result is FASD, where alcohol interferes with the development of the fetal brain.
“I’m asked all the time how much is safe to drink?” says Elliott. “Alcohol affects people in different ways due to genetics and other factors. How the fetus deals with alcohol is different again. There is no one-size-fits-all when it comes to predicting risk.”
Many educated and prosperous women drink a lot of alcohol. It’s unrecognised that many of their children were exposed prenatally.
In the first trimester, when the baby’s body is forming, alcohol can damage the brain and other organ systems and may leave visible signs: a small head, small wide-set eyes, a very thin upper lip and birth defects. The child may be born small and grow poorly.
In second or third trimester exposure, when the body structures have already formed, the visual clues of alcohol harm are missing, but damage to the brain later expresses itself though a spectrum of learning problems and behaviours, including poor attention and memory, impulsiveness, and problems with cause-and-effect reasoning.
Longer term, people with FASD may face serious problems at school, unemployment and homelessness, with an average life expectancy of just 34 years, the leading causes of death being suicide, accidents and substance abuse. In the Western Australian Juvenile Detention Centre, a third of young offenders had FASD. There is no treatment. Only prevention.
When you consider that female drunkenness is now more common and accepted than it used to be, with the alcohol industry aggressively targeting young women, and that around 50 percent of pregnancies are unplanned, FASD should be more prevalent than the numbers suggest. And maybe it is.
“Many educated and prosperous women drink a lot of alcohol,” says Elliott. “It’s unrecognised that many of their children were exposed prenatally. When it comes down to diagnosis, autism or attention deficit hyperactivity disorder may be more acceptable than FASD – acknowledging the symptoms of FASD but not the underlying cause.”
FASD first came onto Elliott’s radar 25 years ago when she set up the Australian Paediatric Surveillance Unit, a national rare disease surveillance system, where paediatricians submit monthly reports of rare infections, injuries and genetic disorders. Still ongoing, it’s been a springboard for wide-ranging research and some of the earliest Australian work on FASD.
This surveillance system is just one element of what is now a lengthy and impressive CV for Elliott, marking numerous leadership roles and awards; and to think, Elliott once thought she’d be an architect. Over the years, Elliott has tried to take on any project she saw as worthwhile. “It adds to workload and stress, but things like the Australian Human Rights Commission’s work with refugees on Christmas Island have been so rewarding. Most rewarding has been my work with Aboriginal people.”
While mainstream Australia has been slow to grapple with FASD, and the alcohol industry only half-hearted in flagging the dangers (the industry recently claimed that putting warning labels on their products would cost a wildly unlikely $600 million to no effect), Aboriginal Australia has been determinedly tackling the problem for some time.
Thanks to her FASD experience, in 2009 Elliott was invited to Western Australia’s Fitzroy Crossing in the Kimberley region. She clearly remembers the deep dryness, the red earth, and the friendliness of the people.
“I went to women’s bush camps where women would come in from 45 remote communities all over the Fitzroy Valley,” Elliott explains. “They’d camp for a few days, the kids would play, and the women would talk about the important issues. That’s how the alcohol restrictions came to these communities. That’s how the FASD study came about.”
With men often out of the picture because of alcohol or illness, it was women who stepped up when they noticed children being born with particular features, who struggled at school. With so many smart and determined women thinking about FASD solutions, Elliott has often been shocked by how governments respond. “I’ve seen it myself, their opinions are often dismissed, funding withheld, and projects fail.”
The Kimberley women knew that talking about FASD in their communities might attract unhelpful attention and judgement, but they were aware of an important reality: as far as the government is concerned, no data, no problem.
Working closely with the community over 10 years, Elliott has witnessed an Aboriginal-led transformation. After proving that FASD affected one fifth of children and was the source of tremendous damage, the Fitzroy Valley now has FASD education, a new child and family centre, family violence centre and positive parenting program and has resisted challenges to alcohol restrictions. Importantly, fewer women drink in pregnancy.
Though FASD was once a largely hidden or unacknowledged condition, Elliott has worked hard to turn the tide. She has chaired the National FASD Technical Network to advise government, co-directs the NHMRC Centre of Research Excellence in FASD, established a NSW FASD assessment clinic, led development of a national FASD website and register, and contributed to Australian and WHO alcohol guidelines and a US drive to standardise diagnostic criteria.
Asked if a thread runs through her wide-ranging career, Elliott pauses for a moment, then says, “Social justice. We have a tremendously sophisticated medical system here – we can save children’s lives. Yet right in front of us are kids who are medically disadvantaged: in Aboriginal communities, immigration detention, juvenile justice. They have a right to health. I’m just trying to advocate for them.”
Written by George Dodd. Photography by Louise M Cooper.