What is the Fetal Alcohol Spectrum Disorder?
Every year around 600 New Zealanders are born with a horrible condition because their mothers drank while they were pregnant.
The terms Fetal Alcohol Spectrum Disorder (FASD) and its more extreme form Fetal Alcohol Syndrome (FAS) have appeared recently in two news items. In a hearing in front of London’s Privy Council the lawyers for Teina Pora and the Crown agreed that Pora suffers from FASD. Meanwhile the English Court of Appeal is wrestling with whether a girl born with FAS is entitled to criminal injuries compensation.
I am moved to write about the subject because there is a widespread ignorance of this horrible condition and because at least one report (from The Daily Mail but repeated in a New Zealand paper) is manifestly and dangerously wrong.
I have no expertise on the medical condition but I was the economist on a Canadian team concerned with measuring with the economics of FASD. Last month I gave a paper on the subject to a Health Promotion Hui of the New Zealand Cancer Society. I report my understanding of the disorder; remember I am not a clinician – although I have checked with clinicians about what I am about to report.
Fetal alcohol spectrum disorders are a continuum of various permanent birth defects caused by the mother's consumption of alcohol during pregnancy. In its severest form, FAS, has physical birth defects as well as neurological deficits.
The symptoms are varied and the overt ones need not all be present. Underlying them is damage to the central nervous system. Prenatal alcohol exposure can damage the brain across a continuum of gross to subtle impairments, depending on the amount, timing, and frequency of the exposure as well as genetic predispositions of the fetus and mother. It can lead to neurological impairment and sometimes to growth retardation. The best known physical symptom is particular facial features associated with those with FAS. Many children with FASD do not have the facial features but are nevertheless damaged.
Diagnosing FASD involves medical and psychological evaluation so its clinical incidence is unknown – we used a US estimate of 1 percent of children having FASD, although I have seen much higher estimates. About one in ten of those with FASD are FAS. That means that in a year there will be born just under 600 New Zealand children with FASD, some 60 with FAS.
Even moderate amounts of alcohol in the mother’s bloodstream can cause significant effects. There appears to be no safe amount of alcohol or safe time to drink alcohol during pregnancy. The Daily Mail was wrong to attribute the conditions to drinking by alcoholic mothers only. Of course their children are more vulnerable, but apparently any drinking by a pregnant woman can generate FASD in her child to some degree.
It is a very sorry condition, yet one which the affected individual had no control over; it is due to her or his mother drinking before they were even born. The damage can be much worse than that from smoking tobacco during pregnancy, as pernicious as that is.
I wont report the economic analysis we did, but note that an individual with FASD is likely to require greater health care while alive and that they may die earlier, perform more badly at school, have lower productivity at work and place greater demands on the justice, education, health and social services systems – not to forget the additional pressures on their families, their friends and their acquaintances. But I do report that the gain to the economy from eliminating all FASD would be very large. While the economic costs of FASD may be huge per case, the human costs are even more horrendous,
Expert clinicians recommend a woman to drink no alcohol at all if she is pregnant or could become pregnant. The corollary is that if she is drinking while pregnant, she should immediately stop.
What is disappointing is that the condition is not widely known, even among young women. Apparently about half of midwives do not warn against drinking (they are better at mentioning not to smoke during pregnancy). For some babies the warning may be too late as there is a period before a woman knows she is pregnant when the fetus is vulnerable. That means we have to reach out to women who can potentially get pregnant. (Allow me a side remark that if such a program was successful perhaps there would be fewer pregnancies conceived while the woman was drunk.)
There is a growing realisation that we need to tackle the issue. The Government is committed to an action plan to reduce harm from FASD which expects to be published by mid-2015. Even if it were implemented immediately (yeah right) there would be still be more than another 400 children born with FASD.
I guess all we can do in the interim is make sure as many people as possible know about the conditions and the public health preventative recommendations not to drink while pregnant. (My small contribution is I wont drink alcohol in the presence of a pregnant woman. I’m not a wowser; I enjoy a pinot with a meal. My approach is one of solidarity with those avoiding this terrible condition.)