The welcome news that the Local Drug Action Team (LDAT) led by Tony Brown has been successful in securing funding to Make FASD History provides much-needed opportunity for public education about the devastating effects of foetal alcohol spectrum disorder (FASD) in our community.
However, it raises two questions.
First, why does the health-conscious Newcastle public know so little about the burden of morbidity from FASD: that is, the emotional cost to families with affected children and the lifetime cost to the community of the person with intellectual disability from FASD which is estimated to be in the order of several million dollars.
The effects of alcohol use during pregnancy on the embryo and foetus were first recognised in the 1960s and I recall making the diagnosis of FASD in the mid-1970s. After I retired from the Newcastle medical school in 2005, I worked for almost 10 years in the remote Kimberley region. In my clinics in Fitzroy Crossing and Halls Creek I saw many cases of children with FASD, and, from a headcount of these cases among the known population of children under the age of five, I estimated that the prevalence was at least one quarter. Several years later, the Lililwan Study conducted by Dr James Fitzpatrick confirmed the extent of intellectual disability.
This evidence for an epidemic of brain damage to unborn children was a key plank in the advocacy for alcohol restrictions that were implemented in 2007 in Fitzroy Crossing. The courage of the Aboriginal cultural leaders in their fight against the river of grog was the event that precipitated the federal government’s action for this problem, with Newcastle LDAT now a beneficiary. We should be inspired by the example of the brave women of Fitzroy Crossing who confronted the shame of the effects on their grandchildren of their relatives’ drinking in pregnancy.
In the wider community, silence from shame and guilt are but part of the reason why FASD is so little recognised: previous reluctance of midwives to ask about alcohol abuse, and ignorance among young doctors as to the possibility of FASD being a cause of behavioural and developmental problems, have conspired with this silence.
Second, why is there absence of outrage over this entirely preventable condition? This is in contrast to the justifiable public outrage about the health effects of groundwater pollution around Williamtown; from residual lead contamination of soil at Boolaroo; and from the effects on lung disease from air pollution from coal dust along railway lines and downwind from the huge open-cut mines of the valley.
Outrage reflects the degree of personal choice to exposure to the risk, given that the risk is known. It is, therefore, maximal when the water we drink or the air we breathe is polluted or poisoned. In contrast, having a drink with friends is a personal choice for us all, yet for young women who may not be aware of the risk, it can have a devastating effect on their embryo.
This, therefore, presents an ethical conundrum, for if my outrage is the cause of your shame or guilt, is it morally justified? To resolve this we have to sublimate our concern in a constructive way through community awareness so that young women are supported by their peer group in choosing to avoid alcohol when planning a family, and in avoiding an unanticipated conception when drinking.