Fetal alcohol spectrum disorders more pervasive than first thought

Everyone, it seems, gets a say in the alcohol debate except the unborn child. On Monday 22 November 2015, the Four Corners program "Hidden Harm" highlighted the need for all of us to consider the lifelong impact of environmental exposures in the womb and to ensure that the developing child has the best possible start to life.

For centuries alcohol has been known to be a teratogen – a poison that interferes with the development of the fetal brain, face and organs. Alcohol readily crosses the placenta, travelling into the baby's bloodstream, where it bathes the developing embryo and fetus. Alcohol use in pregnancy can cause miscarriage and premature birth, and can result in low birth weight babies. Importantly, it can impair brain growth and cause brain injuries by causing cell death, disrupting nerve migration and damaging brain structures important for normal growth and development.    

Ken Jones described fetal alcohol syndrome among babies born to alcoholic mothers 40 years ago. Typically, these babies were small, and grew and developed poorly. They had a characteristic face that included narrow eye openings, a thin upper lip and an indistinct philtrum – the area between the base of the nose and the upper lip. These children frequently had other birth defects, including of the heart, eyes and kidneys.

What we now know is that fetal alcohol syndrome represents just one in a group of disorders (the fetal alcohol spectrum disorders) that can arise from alcohol exposure in the womb. We also know that some of those disorders are not associated with any physical abnormalities. In such children, problems with learning, speech, social skills and behaviour dominate. Not surprisingly, these children may struggle at school and develop poor self-esteem. As young adults they are at increased risk of mental ill-health, self-harm and substance misuse, have difficulty living and working independently, and frequently come in contact with the justice system where their syndrome is often unrecognised or misunderstood.  

The brave mothers interviewed on Four Corners were often unaware of the potential harms of alcohol use in pregnancy. They had not been offered appropriate advice or treatment for alcohol misuse. Some had been perceived as poor parents, and in all children the diagnoses of fetal alcohol spectrum disorders had been delayed. In some, an alternative diagnoses, such as ADHD, had been given without exploration of the underlying cause. Problems with attention and hyperactivity, symptoms of autistic spectrum disorders, defiant behaviour and poor impulse control are common in children with developmental delay, regardless of its cause. In the case of fetal alcohol spectrum disorders they represent symptoms of brain injury rather than the primary diagnosis.

Diagnosis is important but is not a simple process. First, alcohol exposure during pregnancy must be confirmed, but health professionals are often reluctant to ask, fearing the women would be stigmatised. Second, other causes of development delay and abnormal facial features must be excluded – and there are many. Thirdly, a range of brain functions must be assessed by a trained, multi-disciplinary team including paediatricians, psychologists and allied health professionals. Finally, the findings must be aligned with recognised diagnostic criteria.

Fetal alcohol spectrum disorders have been described as a "hidden disability" – it is poorly recognised and sometimes ignored. We do not know how frequently it occurs in Australia. A study from the Fitzroy Valley, in Western Australia, suggests rates of almost one in five but we have no other reliable population-based data in Australia to estimate its national incidence.

Nevertheless, we know it pervades every stratum of society. It is not simply a diagnosis of the disadvantaged, nor is it an "Aboriginal problem". A range of data reveals that Australians are particularly vulnerable: We are among the highest per capita consumers of alcohol in the world, more than half of women drink during pregnancy, binge drinking is on the increase in young women and up to half of all pregnancies are unplanned.

Harm from alcohol is unpredictable and we cannot experiment on women to establish a "safe" level. Prudent advice in our National Health and Medical Research Council guidelines states that the safest option for women who are planning a pregnancy and women who are pregnant is to avoid alcohol.

Fetal alcohol spectrum disorders are preventable and we can each play a role in preventing this tragedy. We must raise awareness of the harms of alcohol in pregnancy in the community, starting in primary schools. Men have an important role in supporting their partner and should consider giving up grog for the pregnancy. We need mandatory warning labels on alcohol. And we need to educate and train health professionals to ask about and manage alcohol use in pregnancy.

Above all we must change community attitudes to excessive use of alcohol. This will require the sort of approach Australia took towards tobacco – tackling advertising and promotions, restricting opening hours and addressing issues of pricing and taxation. Attitudes and behaviours are harder to change, but such levers are essential to promote behaviour change.

To maximise outcomes for children with fetal alcohol spectrum  disorders we need to diagnose early, identify strengths and needs and provide educational and medical support to enable those children to achieve their potential. Such services are poorly lacking. Parents also need support – not shame and blame.

Elizabeth Elliott is professor of paediatrics and child health at Sydney Medical School and a consultant paediatrician at the Children's Hospitals Network (Westmead). This article was first published in the Sydney Morning Herald.