International Fetal Alcohol Spectrum Disorder (FASD) Awareness Day - 9 September 2024

What is FASD?

Foetal Alcohol Syndrome Disorder is the umbrella term used to describe the range of effects on the foetus due to the mother consuming alcohol. FASD is the result of maternal alcohol use during pregnancy. The teratogenic (harmful/poisonous) effects that alcohol has on the foetus are irreversible, and are characterised by lifelong physical and cognitive impairment, which often manifests in the FASD individual experiencing learning and behavioural difficulties, generally finding it extremely difficult to manage the day-to-day functions/activities that they face. This can often lead to delinquent, or risky behaviour, crime, violence, and substance use.

FASD in South Africa

The first FAS and partial prevalence study was undertaken in the Western Cape Province in 1997, reporting rates of 46 per 1 000 grade 1 learners in 1997, increasing to 74 per 1 000 in 1999 and 89.2 per 1 000 in 2001. In these studies, the focus was on FAS and pFAS involving all the consenting grade 1 learners in the study area.

Since 1997, various prevalence studies in SA have revealed FAS rates as high as 26 per 1 000 in Gauteng; 64 per 1 000 in Upington, 74.7per 1000 in Kimberley and 119.4 per 1000 in De Aar, Northern Cape, respectively; 290 per 1 000 in the Winelands area (Western Cape)

When compared with similar studies undertaken in other countries, such as the reported FASD rates of 10 - 15 per 1 000 in the USA; 10 per 1 000 in Canada; 35 per 1 000 in Italy; 18 per 1 000 in France; 20 per 1 000 in Poland; and 12 per 1 000 in Croatia, the extent of the SA FASD challenge is self-evident.

Twenty years after the Foundation for Alcohol Related Research was founded to conduct research on Foetal Alcohol Spectrum Disorders (FASD), South Africa is still facing the devastating effects of prenatal alcohol use, with FASD prevalence rates as high as 250/1000 (25%) in the Western Cape and 282/1000 (28%) in the Northern Cape provinces.

Elsewhere in the country, such as in the Eastern Cape province, rates as high as 130/1000 (13%) have been reported. A recent international meta-analysis, reviewing the reported global FASD prevalence rates, states that the South African FASD rates are 14 times higher than most of the rest of the world.

A general lack of knowledge about the harmful effects of prenatal alcohol exposure appears to be one of the biggest hurdles to overcome in the fight against FASD. When faced with her child’s FASD diagnosis, the common maternal outcry is: “If only I had known!” (that I was pregnant or about FASD).

Of great concern is that even if a pregnancy is confirmed at an early stage, a disturbing number of women receive incorrect information from health professionals, such as “it is safe to drink one or two glasses of wine per day” or “you can start using alcohol again during the last three (or six) months of pregnancy”. The devastating result of this is often a FASD diagnosis. It is generally agreed by leaders in the field that there is no way of determining what a safe amount of alcohol during pregnancy is, but that abstinence during pregnancy is the safest option.

Preventing FASD is not the sole task of the pregnant woman. Fathers and support structures can also make a difference in the prevention of FASD. Many partners will support their pregnant spouse by abstaining from alcohol, studies show that woman are more likely to abstain from alcohol consumption during pregnancy if their partners do so. Effective prevention of FASD requires both male and female to fulfil their roles during the pregnancy. Both genders have a part to play in the reduction of FASD incidence in South African.

Elim need your help to face this problem head on. Everyone participating in FAS Day is invited to share in the "Minute of Reflection" -- 9:09 a.m. on September 9, as it goes around the world. In this magical moment - the ninth minute of the ninth hour of the ninth day of the ninth month - we want to get out the message that in the nine months of pregnancy, while breastfeeding or planning to conceive, women should not drink alcohol. In this minute, we also want the world to remember those millions of people around the world who are living with foetal alcohol disorders.

Partner with Elim, or any organisation dealing with FASD in South Africa to raise awareness of this problem by bringing it out into the open, talking about it, educating your community, or taking part in the international FAS Knot campaign.

The FAS Knot

In 1999, volunteers from New Zealand and South Africa to Arctic Alaska and Canada's northern territories used the FAS Knot as a symbol of our worldwide campaign to inform the world about Foetal Alcohol Syndrome and related disorders. This piece of knotted cord was designed in memory of Abel Dorris, 1968-1991, whose brief and poignant life resulted in the ground-breaking 1989 book about Foetal Alcohol Syndrome, "The Broken Cord," written by his father, Michael Dorris, 1945-1997.

The broken cord may refer to the umbilical cord, the spinal cord, the nervous system, the cord between the generations, or the cable on an elevator. Michael Dorris wrote that if we back off on our children with Foetal Alcohol Syndrome or Foetal Alcohol Effects, they will sink like an elevator once the cable is snapped. Ten years after Dorris's book, a loving community around the world reconnected the broken cord, developing the FAS Knot as our symbol.

Each knot can be made easily and cheaply in less than a minute, and a small group can whip up several hundred in an hour or so. The cord is tied in a square knot, sometimes called a reef knot, the favoured knot for reconnecting a broken line or cord. The knot is stronger than the cord itself, and cannot be broken or snapped.

Whatever size you choose, make a circle approximately the size of your thumb (possibly smaller if you use a thinner cord), then tie right over left and under; left over right and under. It should look like two loops intertwined. Using a straight pin or safety pin, pin this to your lapel or other garment. By choosing a cord instead of a ribbon, we are separating ourselves from all of the other disorders. We are not just another cause trying to raise money -- we represent those millions of individuals and their families who have gone unrecognized, unidentified, neglected on this continent and throughout the world.

The circle symbolizes the womb, a baby's head, the human brain, the earth. And we, a planet-size network of people who care about people living with FAS, are the knot that will make them whole. If women did not drink in pregnancy, FAS would be totally eliminated. Our long-range goal is to rename this small piece of cord, "The FAS Not!"