Scores in the Northern Cape will have little idea that this Tuesday, 9 September, the world will be commemorating International Fetal Alcohol Spectrum Disorder (FASD) Day. Estelle Jacobs is not one of them. Neither is Dr Leanna Olivier.
As project manager of the Hantam Community Education Trust (HCET), this is an issue very close to Jacobs’ work. Much of her time is take up by conducting awareness efforts, poring over how this disorder affects education in general and local communities in particular and conducting workshops on how best to tackle the inevitable implications.
A study undertaken by the Foundation for Alcohol Related Research (FARR) in 2001 shockingly revealed that the sheep-farming town of De Aar in the Northern Cape (NC) was the global capital for fetal alcohol syndrome (FAS). With a staggering 11,2% prevalence rate, these were at the time unprecedented figures anywhere in the world.
The findings were further corroborated by a separate study by the World Health Organization which found that although risky drinking amongst pregnant women stood at around 2.5% nationally, in the Northern Cape, at 24.9%, it was almost ten times higher.
Six percent of women in the province were also found to have a drinking problem and ten percent (both percentages double the national average) of them were likely to binge drink, often leading to incidents of violence and sexual assault. Enter Dr Olivier, Farr CEO, and also the sort of person who is always open to talk – even to pesky small-time journos – about her cause.
“Unfortunately,” she says, “since then (2001) we have reported [FAS] rates as high as 21, 24 and 28 percent in towns surrounding De Aar.” Although the early stages of the research were specifically focused on FAS, “due to [further] research and more refined diagnostic measures, a spectrum of disorders, caused by prenatal alcohol exposure, was discovered. This spectrum is called Fetal Alcohol Spectrum Disorders (FASD), with FAS as one of the conditions on this spectrum. Since 2006 we are therefore referring to FASD.”
What is FASD?
According to the Centers for Disease Control and Prevention (CDC), “FASDs are a group of conditions that can occur in a person who was exposed to alcohol before birth.” These are, amongst others, some of the common signs and symptoms listed by the CDC:
- Behavioural issues which include attention difficulty, hyperactive behaviour and poor judgment and reasoning skills.
- Learning challenges which affect memory, IQ, arithmetic, speech and language.
- Physical problems that include low body weight; problems with the heart, kidneys or bones; vision or hearing problems; abnormal facial features and poor coordination.
The condition is irreversible and with at least one study having found that “the needs of children with FASD are most noticeable in the schools where the teachers are ill-equipped to adapt their teaching and classroom environment to cater for the learning and behaviour difficulties of children with FASD”, does government education policy adequately take those affected into mind?
For Jacobs, not quite. In her years of working around farming communities in the Northern Cape, she has seen first-hand the negative effects of alcohol abuse in general and FASD in particular. At Umthombo Wolwazi, a farm school in nearby Colesberg, Jacobs says they have, as far back as 2007, been running awareness campaigns to counter incidents of FASD at the school. She does, however, concede that “to diagnose a child is extremely costly. You’d need a team of at least a doctor, occupational therapist, school psychiatrist and sometimes a social worker.”
In this vacuum, HCET have thus introduced two special needs classes to the school. There’s a junior (ages 8 – 1) and senior (13 – 17) class which, upon completion, a learner would be placed into a skills-based programme. Jacobs also laments the low numbers of special needs schools especially in FASD hotspots like the Northern Cape and the wine farms of the Western Cape.
FARR’s 2021 research found that out of 536 Grade 1 pupils in nearby De Aar’s primary schools, 64 (119.4 / 1000) of them had either FAS or partial FAS which “is among the most common causes of learning disability worldwide.” This equates to at least one learner in every ten.
The organisation’s efforts in De Aar have been going on for nearly 25 years. “The community’s level of knowledge about FASD,” says Olivier, “the awareness regarding the support to pregnant women and the protection of unborn babies against the harmful effects of prenatal alcohol use is so high that we nowadays diagnose very few babies with FASD in our baby clinics.”
“Unfortunately, there are still a very small number of babies born with FASD. This will always be the case as there are women who are addicted to alcohol and who are not able to abstain from alcohol use during pregnancies.”
Olivier is quick to dispel the notion of the “dop system” (a once-common practice where farm labourers were paid in alcohol) as a major contributing factor to the scourge. “It was not practiced on big scale in this area, became illegal in the 1990’s and if it was as simple as that, by removing the ‘main cause’ of FASD, it should have resulted in a sharp decline of the FASD rate.”
Through funding from the renewable energy project, Solar Capital (more of which to come in an unrelated article), they’ve been able “to implement FARR’s whole of society approach, meaning that we involve as many community members as possible in the various programmes that we offer in our De Aar project.”
These include the 18 month-long Happy Mother Happy Baby Programme where an enrolled pregnant mother “receives support in terms of assessment of her alcohol use risk, individual and group therapy, home visits during her pregnancy and after birth and an invitation for her baby to be examined by the FARR Medical Specialist when the baby is at least 9 months old. If needed, the baby can also receive a neurodevelopmental assessment.”
They also offer youth support groups, an Early Childhood Development Programme, training courses, workshops, an annual seminar and are also involved in the department of health’s curriculum efforts. The NC Department of Social Development has funded a part of FARR’s work for two consecutive years, according to Olivier. However, because government doesn’t recognize FASD as a “public health problem with far-reaching consequences … there is no funding available for awareness (other than the example[s] mentioned above), prevention and management.”
Owing to inadequate funding, as of 31 March, FARR have had to end their projects in the towns of Hanover, Petrusville and Philipstown. For Olivier, this is sad because in some of these towns FASD levels are often higher than more recognised illnesses like HIV/AIDS.
September 9 may fly beneath the radar for many but for Jacobs and Olivier, it is just another reminder of the battle fought and the one that is yet to be undertaken still.
Featured image: Estelle Jacobs (third from left) with colleagues at the Hantam Community Education Trust. Image: Supplied.