Scott Bobb
22 May 2008
Fetal Alcohol Syndrome (FAS), which affects the babies of mothers who drink alcohol during pregnancy, is considered by international health authorities to be the most preventable cause of mental retardation and neurological damage. And in South Africa, with one of the highest rates of Fetal Alcohol Syndrome in the world, civic groups and families are teaming up to prevent it and provide a better future for its victims. Correspondent Scott Bobb reports from Cape Town.
Tisha Lourens is an outgoing, active 12-year-old growing up in a loving adoptive family in Cape Town. But Tisha is small for her age and sometimes has difficulty expressing herself. These are symptoms of Fetal Alcohol Syndrome (FAS).
Tisha's natural mother drank alcohol during her pregnancy and when Tisha was abandoned shortly after birth, her foster parents, Vivien and Peter, struggled first just to keep her alive.
Her mother, Vivien Lourens, says babies born with FAS must go through detoxification. They shake and shiver and suffer a lot of pain. This suffering passes, but the disabilities are permanent.
"People don't realize the damage that they are doing by having one glass of wine. I mean it can affect that child's life forever and you can't put it right. It [FAS] is 100 percent preventable and 100 percent irreversible," she said.
Studies in the U.S. and Canada indicate Fetal Alcohol Syndrome and its related disorders affect up to one percent of all children, but experts say it is under-reported. In South Africa, FAS has been found to be as high as 8 percent in vulnerable communities.
Tisha has not only survived but thrives, playing games with her sister, Leigh-Anne. She goes to a special school for children with learning disabilities, but still struggles to learn to read.
Tisha faces other challenges such as behavior and attention problems. These often lead to problems at school and slow her progress.
Tisha's 17-year-old sister, Carrie, was also born wth FAS. Her parents say she is shy and has difficulty making friends, but she loves to do exercises assigned by her teacher.
"The sums. I like doing sums, mostly," she said.
Dr. Colleen Adnams, a specialist in childhood development at Cape Town University, notes that Fetal Alcohol Syndrome was scientifically identified 30 years ago. But she says only recently have the voices of its victims in South Africa become loud enough to prompt a search for solutions.
"There is quite sufficient information about the outcomes and the problems in children and their families for us to start to look for strategies at a broad level as well as at an individual level towards intervention and towards supporting children with fetal alcohol spectrum disorders," she explained.
She says Fetal Alcohol Syndrome must be confronted on two fronts. The first is to prevent it through education and support programs. The second is to help victims and their families deal with its symptoms and repercussions.
"We want to prevent secondary syndromes, problems of behavior, learning, [and] social outcomes that result from them already having a problem," she added. "And we also want to help them reach maximum potential."
The Lourens help the cause by speaking to teachers, communities, and civic groups. Civic groups are also stepping up, sponsoring daycare and after-school centers as well as adult education programs.
Many of these are on farms where some of the greatest incidence of FAS occurs. To avoid stigma, caregivers try to place FAS victims with other children and provide special education on the side.
Tisha's father, Peter Lourens, notes that most adults with FAS need support. He worries whether Tisha will be able to cope with life after he is gone.
"That is really where I'd like to see the next focus," he said. "Yes, the prevention is definitely something, but what about all the children that are already damaged? The damage is permanent. It cannot be changed. We have to teach them enough that they are able to survive the world around them."
Experts say South Africa is only beginning to address the various implications of Fetal Alcohol Syndrome. There are some excellent programs but these are few.
They say different government agencies responsible for the various aspects of the problem need to work together against FAS. And civic groups and the private sector must help with funding and volunteers.