‘My mum consumed alcohol before she knew she was pregnant – the damage was done’

Jessica Birch knows that you might not be able to detect the mark left by alcohol on her as a developing baby simply by looking at her face.

You would need to be informed of the “sentinel” signs of the often-undetected condition fetal alcohol spectrum disorder to pick up the subtle changes caused by exposure in the womb to alcohol before her mother even knew she was pregnant.

Jessica Birch lives with fetal alcohol spectrum disorder.Credit: Simon Schluter

The skin between her nose and mouth, known as the philtrum, is long and unusually smooth, she explains, and her upper lip is “thin”.

“You have a flat mid-face and bridge of the nose and forehead,” Birch says. The bridge of her nose and middle plane of her face are also flatter than normal, and “you might have folds on the eye or smaller eye openings”.

“Had I not been exposed to the alcohol, it’s likely that my face would have looked a little bit different,” she says.

The condition left other imprints on her life, too. As a child, “I had a lot of issues managing mood and emotional regulation and quite a lot of neurological symptoms”, Birch says.

“My mum definitely identified these things and sought out specialist help; however, I was told, and she was constantly told, these things were behavioural and I would grow out of them.”

Instead, her symptoms worsened and were compounded with childhood anxiety, then depression in her teens. She developed tachycardia – an irregular heartbeat – and as she approached young adulthood, she struggled with cognitive tasks, and to manage her life.

By the age of 22, Birch had developed a cluster of symptoms of physical illness, and despite seeing “a myriad of specialists”, she experienced malaise so intense that she could not leave the house.

“I completely deteriorated to the point where I was bedridden with malnutrition and chronic fatigue, and my mum became very scared for my safety and physical health,” she says.

Birch wants women to know of the grave dangers alcohol poses to their unborn babies.Credit: Simon Schulter

It was only when her mother saw a 2015 episode of the ABC program Four Corners called “Hidden Harm”, about young people living with fetal alcohol spectrum disorder (known as FASD), that she realised what had happened to her daughter.

She collected information and screening material for the disorder and presented it to Birch: “After I read those documents, I burst into tears, and we just cried together because I knew it was absolutely FASD I was dealing with,” Birch says.

At 33, and after years of struggling to get a diagnosis that encompassed all of Birch’s symptoms, she was diagnosed with “FASD with sentinel facial features”. It was caused by the small amount of alcohol her mother had consumed before she even knew she was pregnant.

‘My story is a very common one, and it’s not because my mother struggled with alcohol use disorder … it does not take a lot.’

Jessica Birch, who lives with the symptoms of FASD

“My story is a very common one, and it’s not because my mother struggled with alcohol use disorder; she was on the contraceptive pill when she became pregnant with me,” Birch says.

“She did not know she was pregnant until around the start of the second trimester, and by that stage the damage was done. And it does not take a lot.”

She wants the alcohol industry to be held to greater account, and wants women to have more information on the true risks alcohol poses.

New research by the Murdoch Children’s Research Institute has revealed that even though the children studied who had been exposed to low levels of alcohol in the womb did not show obvious physical, behavioural or cognitive signs, “characteristic changes in the face … persisted until at least six to eight years of age”.

Researcher Evi Muggli said the study, published in JAMA Pediatrics, showed that although changes might not be observable at a clinical level, “we saw changes at a biological level”.

The study, involving Monash, Melbourne and Sydney universities and scientists in Oxford and Belgium, used highly specialised 3D imaging and analysis to examine the faces of children who had been exposed to low to moderate levels of alcohol in utero compared with those who hadn’t.

The team found “consistent changes in the shape of the eyes and nose” of those who had. The changes were similar “regardless of whether they were exposed to alcohol in only the first trimester or continued through the pregnancy”.

There was no clear link between the level of alcohol exposure and the degree of facial change, and Muggli said many factors, including timing of alcohol consumption, the mother’s alcohol metabolism and genetics, could also influence how much alcohol reaches the baby and its effect.

The study should provide some reassurance to mothers who had consumed some alcohol in the first couple of weeks of pregnancy, Muggli said, because it did not find developmental difficulties in the children. But it also demonstrated that any alcohol consumption can leave a trace detectable with imaging.

“What we’ve established is that because of the physical biological effect alcohol has, it is definitely a teratogeen – a chemical that interrupts fetal development,” she said.

“But unlike certain types of drugs, like thalidomide, it is not easy to establish a cause and effect relationship [between exposure and corresponding harms], it is not a linear relationship.”

Muggli said the research should arm educated women who are aware there is a lack of strong evidence linking low alcohol consumption with harm with the understanding that “it does something to the fetus during their development, so why would you take that risk when the stakes are so high?”

Louise Gray, specialist adviser for NOFASD Australia, said the research was significant because it showed that even in the absence of harm that meets diagnostic criteria for FASD, “it does not mean there is no effect from prenatal alcohol exposure”.

“It’s really important for women to understand that if there’s any possibility you may become pregnant, you shouldn’t be consuming alcohol. That’s the safest way to ensure there won’t be any changes,” she says.

Caterina Giorgi, chief executive of the Foundation for Alcohol Research and Education, says the study reinforced the need for pregnancy warnings on alcohol packaging. These were mandated in 2020, and manufacturers were given a three-year transition period in which to introduce them.

“A recent study analysing uptake found the products least likely to carry warnings are spirits and wine, which are more likely to be consumed in the age group where women are most likely to have a baby,” Giorgi says.

It found only 50 per cent of spirit labels and 65 per cent of wine labels had had warnings added so far.

Jessica Birch, who is on the advisory group at NOFASD Australia and who speaks “loudly and proudly” about her experience to try to help other women understand alcohol’s potential harms, said that receiving her diagnosis had changed her life profoundly for the better.

“It has allowed me to shift all the internalisation, the blame, the comparing, the self-loathing, the depression and stuckness that happens when you live with this and allowed me to not only access support and understand myself, but I can heal.”

If you have questions about FASD or would like to speak to someone confidentially the NOFASD helpline is 1800 860 613.

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