Fetal Alcohol Syndrome: Dashed Hepes, Damaged Lives: Since the Term Was Coined about 40 Years Ago, Fetal Alcohol Syndrome Has Slowly Become Recognized as a Public Health Issue. Alicestine October Reports from South Africa's Western Cape Province, Which Has the Highest Reported Rate in the World
October, Alicestine, Bulletin of the World Health Organization
"When I was pregnant with my son I drank a lot-mostly on weekends" says Marion Williams, a 45-year-old mother who lost two of her five children in childbirth.
Williams lives in one of South Africa's famous wine-growing areas in the Western Cape. She started drinking as a teenager and was taken out of school, she suspects, to work to buy wine for her parents.
Her third child was "born slow", she says. She blames herself and her drinking for the disabilities he will live with for the rest of his life.
"There is a lot he wants to do, but I must remind him he's not like other kids: he can work with his hands and build cupboards but not a thinking and writing job," she says, regretfully. "He asks me why I drank so much [while I was expecting him]. I don't really have answers for him."
Heavy drinking during pregnancy can lead to spontaneous abortion or a range of disabilities known as fetal alcohol spectrum disorders, of which fetal alcohol syndrome is the most severe.
Children with this condition are born with characteristic physical and mental defects, including short stature, and small head and brain.
There is no cure. Treatment is focused on mental health and medical services to
manage the resulting lifelong disabilities that include learning difficulties, behavioural problems, language, delayed social or motor skills, impaired memory and attention deficits.
"It is estimated that at least one million people in this country have fetal alcohol syndrome and approximately five million have partial fetal alcohol syndrome and [other] fetal alcohol spectrum disorders. It's tragic because it's completely preventable" says researcher and human geneticist Denis Viljoen in Cape Town, the provincial capital of South Africa's Western Cape.
"Fetal alcohol spectrum disorder is the most corrimon birth defect in South Africa, by far more common than Down syndrome and neural-tube defects combined" says Viljoen, who helped set up a nongovernmental organization (NGO) called the Foundation for Alcohol Related Research in 1997, after reaching the shocking conclusion that one in 10 of the children he saw at the genetics clinic at a hospital in Cape Town was affected.
"I saw then that fetal alcohol syndrome was much more common than people thought ... Public awareness [in South Africa] started with our initial research" he says.
The NGO fights fetal alcohol syndrome on several fronts: it gathers scientific evidence to highlight the problem in the hope that government decisionmakers will fund and initiate prevention programmes; it trains medical and social services staff to develop prevention programmes and it raises public awareness.
Based on his published work and ongoing research, Viljoen estimates that between 70 and 80 per 1000 babies born in the Western Cape have the syndrome the highest known incidence in the world. And the problem is not just limited to the rural poor of the Western Cape. "We see an increasing number of children with fetal alcohol spectrum disorders from middle and higher socio-economic groups coming to our private practice" he says.
In developed countries, a recent surge in new cases is attributed to increased awareness and more doctors diagnosing the problem rather than a worsening of the problem. This is also the case in South Africa, Viljoen says.
There are no reliable global prevalence figures, but a 2005 study estimated a global incidence of 0.97 per 1000 live births based on research in the United States of America (USA).
Some governments run targeted prevention programmes, but in many countries this work is left largely to NGOs.
In the farming community where Williams lives, heavy drinking partly stems from the 400-year-old practice of giving slaves and their descendants alcohol in recompense and to keep them captive through addiction. …