FASD: A preventable lifelong sentence

Inherited burden: The community of Worcestor is one of many that has been affected by high incidences of Foetal Alcohol Spectrum Disorder. (Photo: David Harrison)

Inherited burden: The community of Worcestor is one of many that has been affected by high incidences of Foetal Alcohol Spectrum Disorder. (Photo: David Harrison)

It’s a spectrum of disorders that has been likened in its long-term negative effects to radiation poisoning. Foetal Alcohol Spectrum Disorder (FASD) is a wide range of physical and neurobehavioural symptoms in the baby, caused by the mother’s prenatal alcohol use. Alcohol in the mother’s blood passes through the umbilical cord to the foetus, which means that when the mother drinks during pregnancy, so does her baby.

“The effect of alcohol use during pregnancy is highly individual and ranges from brain damage to physical abnormalities and behaviour problems,” says Marlene de Vries, project co-ordinator of the Foetal Alcohol Syndrome Research Study in the department of psychiatry at Stellenbosch University. “Babies exposed to alcohol in utero are born small, struggle to gain weight, often have sleeping or nursing problems, and are generally easily irritated.”

Chanelle Lombard, research co-ordinator at Cape Town-based nongovernmental organisation Foundation for Alcohol Related Research (FARR), says: “Children born with Foetal Alcohol Syndrome [FAS] — the most severe form of FASD — may often also have other organ damage with lifelong effects, for example, heart problems, hearing problems and [a] cleft lip or palate.”

The characteristics of FASD can be subtle, but one of the most telling markers of FAS is a constellation of facial features, including a relatively small head, a smooth upper lip, and a thin border between the lip and facial skin. But not every child with FASD presents these physical signs, and the condition’s other effects, which include slowed body growth and intellectual disability, are hard to spot in babies and very young children.

The incidence of FASD in South Africa is the highest in the world where research is done, according to FARR. With 11 studies in four provinces completed so far, FARR reports that the rate of FASD in South Africa ranges from 88 children in 1 000 (8.8%) in Wellington in the Western Cape to 13% in Bethelsdorp in the Eastern Cape. By comparison, the rate FASD in the USA is 1.3%, in France and Italy it is 3.5% and in Croatia 4%.

Use, not abuse, is the issue

It’s not alcohol abuse that’s the problem — any amount of alcohol at any stage of a pregnancy can have a devastating effect on the developing foetus.

“Every woman’s body is different and reacts differently to alcohol,” says De Vries. “Some women drink very little and have affected children, while some who drink more have perfectly healthy children. Pregnant women sometimes argue that they drank in previous pregnancies and have perfectly normal children, but every pregnancy is different and there is absolutely no guarantee that drinking even small amounts of alcohol will not seriously affect the health of the unborn baby.”

While the effects of alcohol use in pregnancy are highly individual and differ from person to person, it’s generally accepted that the most damage can be done in the crucial first trimester, when the organs are being formed. Lombard says: “The baby’s brain and central nervous system start developing just two weeks into the pregnancy, and other organs, such as the heart, follow soon after. This means that the baby is incredibly vulnerable to damage caused by alcohol exposure during this time. As a result, the effects on the foetus of alcohol consumed during the first trimester are often the most severe, as it interferes with the formation of the organs and can result in structural damage.”

Because it takes some time for a pregnancy to become apparent, women who are pregnant may not know it, and may drink alcohol early in the pregnancy. This raises the issue of unplanned pregnancies in South Africa, the rate of which is estimated at an alarmingly high 75%, says Lombard. In fact, the South African Medical Association (Sama) says the rate of unplanned and unwanted pregnancies in South Africa is at a “crisis level”. “This means that most women only find out about their pregnancy when they’re already in their second trimester and some damage has already been done,” says Lombard.

While the effects on the foetus early in pregnancy are profound, a baby’s brain continues developing throughout the pregnancy, and it can be affected by exposure to alcohol at any time. There is no “safe time” or “safe amount” to drink during a pregnancy. “It’s never too late for a woman to stop drinking when she finds out about her pregnancy, as this will prevent any further damage from occurring,” Lombard points out.

But unintended pregnancy is just one “risk factor” for having a child with FASD, says De Vries. While there is no cultural, income, race or social barrier to those who may be affected by FASD, certain circumstances can increase the possibility. “Studies have shown that women who are older than 25 and who are small in stature have an increased risk of having a child with FASD,” she says. The risk also increases with the more pregnancies a woman has.

And there’s another specifically South African situation that makes women vulnerable to having children with FASD: our nation’s predilection for heavy drinking. “The weekend drinking culture in South Africa and the high number of drinks often consumed in one drinking session are probably the most dangerous drinking patterns for the development of the foetus,” says De Vries, who points out that pregnant women whose partners, husbands and/or friends drink are often easily persuaded that “just one or two drinks” will be safe.

Binge drinking, which De Vries defines as having three or more drinks on one occasion — one 340ml beer or a 120ml glass of wine being considered one drink — is a serious problem in South Africa. Recent research by the World Health Organisation (WHO) reveals that more than a quarter of South Africans binge drink. In fact, South Africans hit the bottle harder than most, holding the dubious honour of being one of the top 20 biggest drinking nations in the world and the third-biggest drinking nation in Africa.

More significantly, South African women top the list of heavy-drinking females in Africa: the WHO reports that 41.2% of local women are binge drinkers, followed by Burkina Faso (36.8%), Mozambique (32.8%), Nigeria (32.9%) and Zimbabwe (20.3%).

A lifelong problem

“It’s very important to understand that the effect of alcohol use during pregnancy doesn’t only affect the individual when he or she is young,” says De Vries. “The effects have an influence on how that person functions for the rest of their lives.”

Children with FAS are smaller than their peers, struggle to gain weight, are often hyperactive, and have behavioural problems and problems in social adjustment, says De Vries. “However, the most devastating effect is the damage to the brain which affects the cognitive abilities of the child. This causes learning difficulties in school, which often leads to their dropping out of school early. In adulthood all these problems still exist and individuals struggle to live and function independently, to adapt in the world and to be self-efficient.”

Lombard confirms this. “Lifelong issues include problems with school and social skills, inability to live independently, mental health problems such as depression, substance abuse, inability to keep a job and, frequently, problems with the law.”

It’s this long-term social fallout that prompted John Boulton, professor of paediatrics at the University of Newcastle in New South Wales, Australia, to liken FASD to “the Thalidomide disaster, heavy-metal poisoning or radiation sickness”. (Thalidomide was a drug sold over the counter in the 1950s to alleviate morning sickness in pregnant women, which caused serious malformations in the developing foetus; many didn’t survive.)

Speaking to an Australian commission earlier this month [October], Boulton said that studies conducted in northern America found that 60% of FASD-affected children over the age of 12 engaged in escalating criminal behaviour; that alcohol abuse, depression and suicide rates were extremely high among people with the disorder; that 80% of affected adults had difficulty with employment; and that 40% had spent time in prison. While similar national figures for South Africa aren’t available, there’s no reason to believe they would be significantly different.

What it comes down to is that prevention is the only cure. “The damage caused by alcohol during pregnancy can never be undone,” says De Vries, “so to avoid having an affected child, women who drink, even if it’s only small amounts, should be on contraceptives and not stop using their contraceptives while they’re still using alcohol. If a couple is planning a family, our advice would be for the woman to stop drinking completely before she stops her contraceptives, and to stay entirely sober for the whole pregnancy, and for the entire time she breastfeeds.”

Lombard concurs. “If a woman is sexually active, is not using contraceptives and is drinking alcohol, she is considered high risk for having a baby with FASD. Our advice is that no alcohol whatsoever should be consumed during pregnancy, and that if a woman is planning a pregnancy, she should stop drinking immediately.”

For women dealing with a baby with FASD, early identification of the disorder is critical, says De Vries. Because of its presentation across such a wide spectrum of symptoms, diagnosis isn’t easy, and it requires a lengthy, multidisciplinary assessment.

“There’s no cure for FASD, but much can be done to improve affected children’s learning abilities and general functioning,” says De Vries. “Timely interventions can help parents and children with the disorder learn behavioural strategies to improve their quality of life.”