An intervention programme for foetal alcohol syndrome in the De Aar community reduced the prevalence from 12.2% (the highest recorded in the world) to 8.5%. Photo: Wilma Stassen

A far-flung Northern Cape town has been making world headlines over the last few years – unfortunately for the wrong reasons. A 2002 study revealed that more than one in 10 (12.2 percent) children in the De Aar community had foetal alcohol syndrome (FAS), giving the town the highest reported rate in the world.

However, the latest FAS statistics for De Aar (published in the scientific journal Alcohol and Alcoholism in October) tell a more hopeful story – there has been a 30 percent drop in the FAS rate since the 2002 study thanks to an intervention programme by the Foundation for Alcohol Related Research (Farr).

Although this is a remarkable achievement, since it is the highest reported decrease in an FAS community prevalence rate in the world, De Aar’s current rate of 8.5 percent is still among the highest reported.

Another first for Farr happened recently when its founder, Professor Denis Viljoen, received the Henry Rosett Award from the Research Society on Alcoholism, an international body of scientists studying alcoholism and related topics. Viljoen is the first non-American to receive this award in recognition of the contribution his extensive research has made to the field of FAS.

“Where there is poverty, you will find FAS,” said Viljoen, who was the principal investigator of the 2002 study that revealed the shockingly high prevalence of FAS in De Aar. This stern, no-nonsense semi-retired professor has little time for the media, which he believes have portrayed the communities he works in in a poor light instead of addressing the underlying issues.

The unemployment rate in De Aar is a staggering 80 percent, and unsurprisingly many in the community live in poverty. This small, dusty town in the arid Northern Cape used to have a large railway repair and manufacturing yard and work opportunities. But as activity at the railway declined, so did the job opportunities.

“Joblessness and poverty have created a general feeling of hopelessness in the community,” said Farr area co-ordinator Lian-Marie Drotsky, who is stationed at the “pink house” in De Aar from where the foundation conducts research and operates prevention programmes.

Due to the high rate of poverty, many pregnant mothers are malnourished, which stunts foetal development. “There were women weighing just 40kg,” said Viljoen. “They are like match sticks.”

Because of their low weight and poor general health, these women have a much lower alcohol tolerance than normal-weight women. Viljoen believes that the lack of job opportunities and recreation drive people to alcohol.

“In the very poor communities, alcohol is the recreation.”

The high number of shebeens aggravates the issue. De Aar has a population of 28 000 and, at last count, more than 100 shebeens, or one for every 280 people.

“Alcohol is available everywhere, and now they even have mobile shebeens,” said Viljoen. These are bakkies stocked with alcohol that travel to farms and communities far from shebeens or bottle stores. Shebeens also sell alcohol on credit, giving people access even when they don’t have money to buy alcohol.

“The ‘dop’ system has been replaced by shebeens,” said Viljoen, who believes the “drinking culture” was first introduced into these communities with the “dop” system that allowed workers to be paid a part of their wages in alcohol.

“It is really difficult to go into a population anywhere and find a problem, and just withdraw and write about it,” said Viljoen.

“I don’t think it is totally ethical if you are not prepared to make some effort to alleviate the bad findings.”

After studying the population and finding the alarming 12.2 percent FAS rate, Farr decided to implement an intervention programme. In 2003 Farr launched a study to compare FAS rates in the community before and after intervention. This study eventually recorded the 30 percent drop in the FAS rate.

For its research, it recruited pregnant women visiting antenatal clinics. It then determined each individual’s risk for having an FAS baby, and implemented an intervention strategy according to the women’s risk.

Low-risk women were counselled on the dangers of drinking and smoking during pregnancy; medium-risk women were counselled and followed up throughout their pregnancy; and women at high risk were sent for rehabilitation to try to manage their alcohol use. They also received counselling and follow-ups throughout their pregnancies.

The babies born from these mothers were followed up at nine months old, and only 8.5 percent were diagnosed with FAS compared to the previous 12.2 percent.

The intervention didn’t only have a positive effect on the FAS rate; it also improved the morale of the community. “These women (who were enrolled in the study) were the poorest of the poor – they were malnourished and often didn’t take very good care of themselves,” said Viljoen. But through the counselling they received from the Farr fieldworkers and “because of our bonding with them, they became, almost ‘model citizens’,” said Viljoen.

“They started dressing better, they groomed themselves better, their own nutrition improved – they weren’t the same group of women we started off with initially.”

Since that first intervention study, Farr has implemented a “healthy mother, healthy baby” programme, aimed at teaching mothers about the advantages of a healthy pregnancy, as well as an “FAStrap” programme to teach community members and parents with FAS children how to manage their child’s impairment.

It also provides a daily meal for up to 90 needy children – many of who have FAS – and pregnant women, and has a programme teaching FAS children to play musical instruments.

It also implemented a “Do you have three minutes?” project whereby nurses at the antenatal clinics can identify pregnant women at risk of having a FAS baby by asking just three simple questions – which take only three minutes.

“I think the actual rate of FAS will continue to drop according to the amount of effort you put in,” said Viljoen. “You can’t just attack it from one side, you have to go as broad as possible.”

But all these projects cost money, and funding for FAS projects is scarce. “We actually nearly closed down the De Aar centre recently.

“We did everything we could possibly do to raise funds – it takes R1 million to keep the project running for the year. Then, at the very last minute, we were given rescue for a year.”

So the intervention projects will continue for another year, hopefully saving another 50-odd children from developing FAS, and helping the De Aar community to carry the burden of FAS for a while longer.

There are 60 other towns in the Northern Cape alone that have exactly the same problem, Viljoen points out. “But they don’t have any Farr programme.” – health e-news service