The FARR Resource Library

Over the years FARR have collected a large amount of information and resources that we are able to share with interested parties. Should you require any furhter information regarding FARR and/or FASD, you are welcome to contact us on: info@farrsa.org.za or 021 686 2646

More Information

General information

Globally, FASD is the most common preventable form of mental- and physical disability. The damage caused to the developing fetus by alcohol exposure during pregnancy, is permanent and irreversible. The burden of FASD on our society is being ignored despite the fact that it is far-reaching (socially and financially) and completely preventable. It is estimated that in the United States, FASD costs $6 billion (approximately R42 billion) annually and the average cost to treat a person with FASD for life is $1.4 million. The estimated burden of FASD in South Africa has not as yet been calculated, but is being investigated. The full impact of FASD in South Africa is immeasurable when it is estimated that at least 28% in specific communities may have FASD (according to research undertaken by FARR). Being affected with FASD has far reaching and costly implications for the individual and the family, community and country. The diagnostic costs and the management of the primary disabilities are immense. If undetected and untreated many individuals with FASD present with secondary disabilities such as mental- and other health problems, substance and other forms of abuse, consequences of risky behavior and conflict with the law. It is therefore extremely difficult to calculate the cost of this condition which is already affecting thousands of South-Africans. In the light of this, it is apparent that all efforts should be put in place to raise awareness about the harmful effects of alcohol use during pregnancy and need to prevent children from being born with FASD.

When a pregnant mother consumes alcohol, so too does her unborn baby. Alcohol consumed by a pregnant woman, is carried via her blood circulation system, through the placental tissue that separates the mother and baby’s blood systems, delivering the alcohol directly to the developing tissues of the fetus. Alcohol is especially devastating to the brain of the developing fetus, as alcohol easily crosses the blood-brain barrier.

Alcohol can damage the developing fetus throughout the entire pregnancy and the damage caused is not isolated to any particular stage during pregnancy. The severity of FASD depends on the quantity and timing when alcohol is consumed during pregnancy, together with numerous other factors such as: the mothers’ body mass index and overall health, age, food consumption at the time the alcohol was ingested, genetic predisposition, other substances such as smoking, etc.

There is no known risk-free amount of alcohol a pregnant woman can consume without increasing the risk of damage to the developing fetus. All women who consume alcohol while pregnant are at risk of having a baby with Fetal Alcohol Spectrum Disorder (FASD). Research indicates that even light consumption of alcohol during pregnancy can harm the unborn baby. Moderate to heavy alcohol consumption, especially binge drinking, is associated with a higher risk of having a baby with FASD.

Heavy alcohol consumption is defined as an average of about two standard drinks per day during pregnancy and/or 14 drinks per week. Binge drinking is defined as at least 5 standard drinks on any occasion.

Of all the substances of abuse, including heroin, cocaine and marijuana, alcohol causes the most serious lifelong neurological and physical damage to a developing fetus.

Fetal Alcohol Spectrum Disorders (FASD) is an umbrella term, which includes all possible disorders associated with prenatal alcohol exposure.

Fetal Alcohol Syndrome (FAS) is the most severe form of this disorder and the leading cause of preventable mental disability in the world.

The following features should be present for a diagnosis of FASD (by a trained Specialist medical practitioner, using the standardised scientific assessment tools developed by national and international FASD specialists:

Small head size

Growth retardation before and after birth(height & weight)

Intellectual disability

Specific facial features such as long, smooth, upper lip, small openings of the eye (called palpebral fissures), etc.

Organ anomalies e.g. heart defects

In addition, individuals with FASD may present with a variety of learning, behavioral and psychological symptoms without having any physical abnormalities.

Frequently asked Questions

What is Fetal Alcohol Spectrum Disorder (FASD)?

FASD is the broad term used for all developmental abnormalities caused by alcohol consumption during pregnancy.

Fetal Alcohol Spectrum Disorder (FASD) is caused by alcohol exposure during pregnancy. Alcohol acts as a powerful toxin (poison) to the developing fetus and can affect the fetus within 20 minutes after the ingestion of alcohol. It affects the development of all fetal tissue and organs, although the brain and the nervous system are the most vulnerable.

After birth, the baby may present with a range of physical, neurological, behavioral and intellectual abnormalities that become more evident over time. In addition to intellectual deficits, an individual with FASD may present with the following:

Growth retardation (small for age before and after birth)
Organ damage, especially the brain, eyes, ears and heart
Abnormal facial features
Brain damage, which result in lifelong challenges such as learning disability, interpersonal relationship problems, developmental disability such as fine motor development and coordination. In addition, most of these children also present with attention and hyperactivity symptoms.

In Adolescence an individual with FASD may present with additional challenges such as:

Poor scholastic performance
Mental health- and substance abuse problems

Fetal Alcohol Syndrome (FAS) is the most severe form of Fetal Alcohol Spectrum Disorders. Other disorders within the FASD spectrum are:

Alcohol Related Neurodevelopmental Disorders (ARND): Any of the developing fetus’ organs can be affected by the poisonous (toxic) effect of alcohol, however the brain is especially vulnerable. Children with ARND will present with brain (neurological) damage, but few of the other obvious signs or symptoms of FASD. Diagnosing ARND demands specialized neuro-developmental assessments (psychological testing) using scientifically developed assessment measures for FASD. This needs to be corroborated by a positive history of alcohol consumption during pregnancy, through an extensive maternal interview. Children with this condition are often wrongly labelled as naughty, hyperactive and / or with attention deficit disorder (ADHD-like behavior).

Alcohol Related Birth Defects (ARBD): ARBD is characterized by organ damage caused by alcohol consumption during pregnancy. These individuals do not present with any other signs of FASD, only developmental abnormalities of organ systems, i.e. heart, eye, hearing, skeletal. Diagnosing ARBD would include an extensive maternal interview confirming alcohol consumption during pregnancy as well as clinical examination by a trained medical specialist.

Partial FAS (PFAS): An individual with PFAS usually presents with some of the facial and physical signs of FASD, but do not show all features associated with FAS.

How much alcohol is safe to consume during pregnancy?

No amount of alcohol is safe to consume during pregnancy.

Alcohol is metabolised differently in all individuals. Some people may feel intoxicated from a few sips of wine while others may be able to tolerate more alcohol. The body’s response to alcohol will vary from person to person due to various factors such as body weight, nutritional status, general health and gender. When a woman is pregnant, her body’s ability to metabolize alcohol also changes. This is compounded by the fetus’ susceptible nervous system to the harmful effect of alcohol as well as the inability of the immature fetal liver to metabolise alcohol.

What is the extent of FASD?

The prevalence and extent of FASD is a worldwide challenge. Formal figures of the incidence for a few countries such as America (0,1 3%), France (2,1%) are available. Prevalence studies conducted by FARR (see table below) has shown that South-Africa has the highest reported rate of FASD worldwide. It is 30 – 50 times more common than the next most common birth defect, namely Down Syndrome.

*These figures are under formal analysis and confirmation

The above studies were conducted according to international scientific standards and guidelines, on grade 1 learners (school entrants) or infants (see De Aar, 2005 – 2009). The findings can therefore be generalized for the specific local communities, but is not sufficient to provide a national prevalence rate for South Africa.

It has been estimated that more than 2 million of the South African population are affected by FAS and a further 5 million have features of FASD. Because international standards are used in the studies, we are able to compare our data with the rest of the world.

Can anyone be affected with FASD?

Any developing fetus exposed to prenatal alcohol consumption is at risk of being born with FASD.

Can FASD be cured?

FASD CANNOT be cured. The damage caused to the developing fetus is permanent and cannot be reversed. Fortunately, FASD is 100% preventable, by not exposing the developing fetus to alcohol during pregnancy!

How is FASD diagnosed?

FASD can only be diagnosed with the use of standardized scientific diagnostic assessments, by a trained medical specialist. This is most importantly to prevent labelling and stigmatization of individuals and their families.

The diagnosis of FASD can only be made by a trained medical specialist part of a multi-disciplinary team of trained experts and includes:

Clinical assessment (IOM model): undertaken by a medical specialist, trained in the diagnosis of FASD, using special tests and criteria.

Neurodevelopmental assessment: undertaken by trained psychometrist using suitable tests for diagnosing FASD and to assess the development of the individual.

Detailed interview with the mother: undertaken by a trained member of the multi-disciplinary team to confirm alcohol consumption during pregnancy as well as relevant personal and medical history.

The results of these investigations are assessed by the team, and only if all three components support it, can a diagnosis of FASD be made.

What can be done to prevent FASD?

In many women, pregnancy is only confirmed at around 3 months of pregnancy. By that stage, if they have consumed alcohol, much of the harmful effects of alcohol on the developing fetus, will have already been caused. For this reason, the prevention of FASD should start with promoting awareness and education regarding the harmful effects of alcohol use during pregnancy among all sexually active women of child bearing age. Also, all pregnant women who are or have been consuming alcohol should be encouraged to stop the use of alcohol as this could prevent and minimize further risk to the developing fetus.

Professionals such as social workers, health workers and educators should receive appropriate training to promote awareness and prevention of FASD.

If I consumed alcohol during my last pregnancy and my baby was fine, could I consume alcohol in the next pregnancy?

The best advice to all pregnant women is not to consume alcohol in any of their pregnancies.

When the same alcohol consumption habits are followed in two pregnancies, the effects may be completely different on both fetuses. This is due to the fact that the extent of harm caused by alcohol consumption during pregnancy is dependent on:

The health, age and nutritional status of the mother.
Other substance use by the mother e.g. cigarette smoking, recreational drug use (marijuana, etc.)
Genetic factors. Maternal and paternal genetic factors that we all inherit from our parents that make us more or less susceptible to the harmful effects of alcohol. However, no two persons are more than 50% similar (our brothers, sisters, parents or our own children) so each pregnancy is different.

What if I am pregnant and I have been using alcohol?

All pregnant women who are or have been consuming alcohol should be encouraged to stop the use of alcohol as this could prevent and minimize further risk to the developing fetus.

It has been shown in research on pregnant women, that in those who stop using alcohol (compared to those who continue) there is a measurable beneficial effect on their babies’ health outcomes (baby’s benefit when their mothers stop using alcohol).

If I am worried that I or someone I know has a child with FASD, who can I go to for a diagnosis?

Visit your nearest primary health care clinic and ask to be referred to the relevant diagnostic service. In some areas in South Africa, this might require a referral to a tertiary hospital. However, it would be important to establish whether such an agency is able to offer this level of specialized service, including trained personnel and facilities. FARR has gained valuable experience in the management and support of individuals and families affected by FASD. You are welcome to contact us for further information in this regard.

If a woman has FASD, can she pass it on to her children?

A baby can only have FASD when it has been exposed to alcohol during pregnancy. If a woman who has FASD does not expose her unborn baby to alcohol, the baby will not have FASD.

Resources

Academic Publications by Prof. Denis Viljoen:
DenisViljoenPublications_Dec2011.pdf

Post Graduate Research in FASD
If you are a university student and you are considering post-graduate research in FASD, please email us at: info@farrsa.org.za.

Sundry Publications

Refer to list of FARR publications

Central Drug Authority, South Africa: http://www.dsd.gov.za/cda/index.php

White papers:
National Drug Master Plan February 1999
An Overview of Health and Health Care in South Africa 1994 2010:

Priorities, Progress and Prospects for New Gains (A discussion document commissioned by the Henry J. Kaiser Foundation to help inform the National Health Leaders Retreat, Muldersdrift, January 24-26 2010) HM Government, United Kingdom: Healthy Lives,

Healthy People: Our strategy for public health in England, 30th November 2010

Liquor Acts
South African National Liquor Act (No 59 of 2003)
Western Cape Liquor Act, 59 of 2003

National Human Genetic Guidelines: Contact the Department of National Health (Human Genetics Division) on: 012 312 0000