What is Fetal Alcohol Syndrome?
Fetal Alcohol Syndrome (FAS) is caused when a pregnant woman drinks alcohol. The alcohol can reach any part of her body and the baby within 20 minutes after she has taken a drink. The alcohol is toxic (poisonous) for the unborn baby and it may damage any of the unborn baby’s organs, although the brain and the nervous system are the most vulnerable. For this reason, babies exposed to alcohol during pregnancy are at risk of permanent brain damage!
After birth, the baby may have a whole range of physical, neurological and behavioural problems that become more and more evident with time. Due to the variances of IQ testing, if we were to place a normal child with an IQ of 100, then a FAS child will have an average IQ range of between 65 and 75. Owing to the South Africa policy of inclusive education, most of these children will be placed in main stream schools. The children with FAS including their parents and teachers fight a constant battle with their special educational needs.
In addition to intellectual deficits, a child with FAS may suffer from the following defects:
- Growth retardation (before and after birth – they are small for their age)
- Any organ can be damaged, especially the brain, eyes, ears and heart
- The baby’s facial features could be affected
- Brain damage – which results in lifelong problems such as learning disabilities, interpersonal relationship problems, developmental disabilities such as fine motor development, coordination, arithmetic and cause and effect reasoning. In addition, most of these children have attention and hyperactivity problems.
When a child with FAS grows up, there are often additional challenges such as:
- Low attendance in High School
- Drug and/or alcohol abuse
- Trouble with the law
- Inappropriate sexual behaviour
What is Fetal Alcohol Spectrum Disorders (FASD)?
FASD is a broad spectrum of abnormal signs and symptoms in children due to mothers drinking when they were pregnant with these children.
FAS is the most severe of the Fetal Alcohol Spectrum Disorders, the so-called tip of the FASD iceberg. The other disorders or defects that can be diagnosed are:
Alcohol Related Neurodevelopmental Disorders (ARND)
Any of the unborn baby’s developing organs can be damaged by the poisonous (toxic) effect of the alcohol; however the brain is especially vulnerable. Children with ARND have brain damage, but few of the other obvious signs or symptoms of FAS.
Making this diagnosis demands careful neuro-developmental assessment (psychological testing) using specialized tests for FASD. When diagnosing ARND, it is very important that we have the definite or confirmed fact that the mother drank alcohol during her pregnancy.
Children with this condition are often wrongly labelled as naughty, hyperactive and / or with attention deficit disorder (ADHD-like behaviour).
Alcohol Related Birth Defects (ARBD)
Sometimes children are born without the typical physical appearance of FAS, but with damaged organs (e.g. heart, eye, hearing, skeletal and other defects). The diagnosis of these children is a complex procedure and requires specialized paediatric knowledge and skills. Again, when diagnosing ARBD, it is
very important that we have the definite or confirmed fact that the mother drank alcohol during her pregnancy.
Partial FAS (PFAS)
A child with PFAS usually has some of the facial and physical signs of FAS, but is not as severely affected as a child with full-blown FAS.
Fetal Developmental Stages
- Local and international stats
Prevalence studies have been done in several communities South Africa. All these studies were conducted by the Foundation for Alcohol Related Research (FARR):
|De Aar||Northern Cape||2003||12%||122/1000|
|De Aar||Northern Cape||2005||19.9%||199/1000|
|De Aar||Northern Cape||2009||8.6%||86/1000|
All the above studies are 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. Nevertheless it has been estimated that more than 2 million of the South African population is affected by FAS and a further 5 million may have the lesser features of FASD. Because international standards are used in the studies, we are able to compare our data with the rest of the world.
While the AIDS epidemic in South Africa has been well publicized and documented in recent years, a lesser-known health crisis with profound socioeconomic implications has been developing for hundreds of years. The Western Cape Province of South Africa has the highest rates of fetal alcohol syndrome (FAS) in the world. FAS is caused by maternal alcohol use during pregnancy and is one of the leading causes of preventable mental and physical retardation among infants worldwide.Infants suffering from FAS often have low birthweights; physical dysmorphology, most notably in the face and head; and developmental difficulties. The most recent statistics on FAS rates in the Western Cape Province, reported by the National Institute of Alcoholism and Alcohol Abuse, show that 40.5 to 46.4 per 1000 children are found by screening to have FAS.Compare this rate with a FAS frequency of 0.5 to 2.0 per 1000 children in the United States or the average rate of 0.97 per 1000 children in the developed world,2and the difference is staggering.
In the population-based study “Maternal Risk Factors for Fetal Alcohol Syndrome in the Western Cape Province of South Africa,” a control group and a case group of mothers of varying socioeconomic status were used to examine the factors that are associated with mothers’ having children with FAS. Two of the most telling findings of the study were that mothers of lower socioeconomic status were at higher risk for having children with FAS and that the study community as a whole had very limited knowledge or understanding of FAS and the implications of consuming alcohol during pregnancy. In addition, this study corroborates current research that is finding an increase in FAS in the Western Cape Province and in the rest of South Africa. The study accurately summarizes contemporary drinking patterns as a product of the Western Cape Province “dop” system and concludes that prevention is needed to combat the FAS epidemic. For prevention to be effective, however, it is essential to understand the legacy of the dop system in the Western Cape Province and to examine why FAS rates are so astonishingly high in such a small geographic area.
[Source: US National Library of Medicine
National Institutes of Health, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1449323/]
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 FAS for life is $1.4 million.
- History of FAS in SA
In the 1700s European colonialists capitalized on the fertile land and climate of South Africa to create an agricultural economy. In the Western Cape Province, this meant grape and wine production.To pay the farm-workers, the colonial farmers developed what is now known as the dop system.
Payment under the dop system initially consisted of bread, tobacco, and wine.While this method of payment was not particularly unusual in farming communities, the dop system became unique to the Western Cape as farmers “institutionalized alcohol as a condition of service.”One incentive for using the system was that it provided an ingenious way for farmers to dispose of excess wine that was deemed unfit to drink. As one study noted, it was “reject wine unsuited for the open market”and was sold back to the farmers for next to nothing.
The dop system continues today, despite being recently made illegal, and after 300 years of implementation in the Western Cape Province, the world is only now beginning to see its devastating repercussions. The system has become so ritualized that “it is still apparent today that alcohol is a favored, valued and expected commodity among many of the local population workers, who receive low pay and who live in very humble circumstances.”To counteract this mentality, the health care sector in the Western Cape Province has formed the Dop-stop Association to educate the community and inform farm-workers of their legal rights.The dop system promoted and sustained a culture of alcohol intake that not only ensured that local communities stayed impoverished, but also had negative biological, psychological, and social consequences for the population. Nowhere is this more evident than in the effect the system has had on the mothers and children of the Western Cape Province.
- Social Implications
FAS is now an epidemic in the Western Cape Province. In a community dependent on a low-wage economy that is slowly undergoing modernization, FAS has dangerous implications. There is strong evidence that farm children in the region, who are often malnourished or suffering from FAS, grow up to be low-skilled, malnourished adult farmworkers. It is a difficult cycle to break, and FAS children born into impoverished conditions will be hard pressed not to perpetuate the cycle.
In addition to labor rights, the physical and mental health of the community must be attended to through structured educational interventions. There are limited resources in the Western Cape Province for pregnant women and for children with FAS. Primary intervention methods should focus on the education of mothers and the community at large on the direct correlation between alcohol consumption during pregnancy and FAS. As a secondary intervention, it is crucial that FAS continue to be monitored and tested for at the earliest possible age. Timely data collection documenting current FAS trends among children in the region is critical to implementing effective methods of intervention and awareness programs.1
An important research project that could serve to refine intervention methods would be to study the social habits of mothers in the Western Cape Province who do not produce offspring with FAS. Mothers of FAS children in the province reported drinking heavily to cope with a stressful relationship with an alcohol-abusing man. Furthermore, mothers of FAS children were found to consume 97% of their alcohol intake on weekends, which is when they spend a significant amount of time with their partners. This could suggest that women who are not producing FAS children have stronger, healthier support networks, reducing their reliance on alcohol. Researchers are also looking into the possibility of biological and genetic mutations caused by generations of alcohol use in the region, making children more susceptible to FAS.
FAS has profound socioeconomic implications for the future health of the Western Cape Province. The combination of high FAS rates and high HIV infection rates poses a serious threat to the family structure and core work-force in the region. South African public health authorities must address the past inequities of the dop system and restructure health care systems and strategies to address the epidemic of FAS in the Western Cape Province. Children with FAS are the ones who will suffer the consequences of an outmoded farming system predicated upon the abuse of human rights for profit. The highest rates of FAS in the world are caused by a multitude of contributing factors, and a holistic, comprehensive approach will be necessary to begin reversing a trend that has been developing for 300 years.
Response Misinterpretation Chart (FARR)
|Noncompliance||· Willful misconduct
· Attention seeking
|· Difficulty translating verbal instructions into action
· Doesn’t understand
|Repeatedly making same mistakes||· Willful misconduct
|· Cannot link cause to effect
· Cannot see similarities
· Difficulty generalising
|Often late||· Lazy, slow
· Poor parenting
· Willful misconduct
|· Cannot understand the abstract concept of time
· Needs assistance organising
|Not sitting still||· Seeking attention
· Bothering others
· Willful misconduct
|· Neurologically based need to move while learning
· Sensory overload
|Poor social judgment||· Poor parenting
· Willful misconduct
· Abused child
|· Not able to interpret social cues from peers
· Does not know what to do
|Overly physical||· Willful misconduct
|· Hyper or hypo-sensitive to touch
· Does not understand social cues regarding boundaries
|Does not work independently||· Willful misconduct
· Poor parenting
|· Chronic health problems
· Cannot translate verbal directions into action
- What is being done about the problem in the country
The cost to South Africa and South Africans has not yet been fully assessed, but is in the process. Nevertheless, the full impact is immeasurable when it is estimated that 10% of a total of 50 million citizens may have FASD.
Estimates of the cost of the loss of intellectual capacity to the country (where the IQ is reduced from 100 to 65-70), the impact on schools where children with FASD are educated (disruptions through poor concentration and hyperactive behaviours, antisocial tendencies etc.), early school dropout and the associated psycho-social problems, diminished outputs in the workplace, crime (a long-term USA study has demonstrated that more than 50% of alcohol-affected persons have trouble with authorities before the age of 21) and many other aspects, run into millions of Rands.
- What is being done about the problem in the Western Cape
PROMISING PREVENTION STRATEGIES
There is support for a public health approach to the prevention of FASD through a comprehensive model that includes universal (community wide), selected (women of childbearing age) and indicated (high risk women) strategies.
Raising awareness on a community level, and engaging community members in action around alcohol problems, is an important component of a comprehensive approach to FASD prevention. However, although there is some local government support, communities find it difficult to make appropriate plans and take action as they are struggling with issues of daily survival. Existing programmes (such as KeMoja) and new initiatives (such as the “Sober SA, Safer SA”) could provide resources for community action.
Women in general
The training of service providers to screen all women of childbearing age for alcohol use, to offer educational information to low risk women, and refer women at high risk of AEP, was tested and results appear promising.
High risk women
There is growing evidence to suggest that a brief intervention with women at high risk of AEP, and especially those who have previously had a FASD child, can improve contraceptive use and or reduce alcohol consumption. The intervention can be either before or during pregnancy, and can reduce the exposure to alcohol. Studies made use of standardisedscreening tools, such as the AUDIT, and 3-5 brief intervention sessions, with educational material. In all the studies presented there was improvement in both the control and intervention groups, however, those receiving the full brief interventions showed the most change. It was recommended that lay counsellors are the most appropriate personnel to carry out the intervention. A similar approach was applied to women who smoke in pregnancy and came to similar conclusions, and recommended the use of peer counsellors. In assessing outcomes, it is never possible to be sure if women answer truthfully in their responses to questions on substances. A computer assisted self assessment in clinics was discussed as a future possibility, but the consensus was that for now the emphasis should be on establishing an empathetic rapport between service provider and client, increasing the possibility of an honest and fruitful discussion.
|• Extrapolate from surveys to estimate AEP
• Improve registration of diagnosed cases
|Screening and brief
|• Introduce standardised screening for substance abuse in all health services
• Introduce a protocol for brief interventions that match the level of risk
• Improve routine record keeping of screening and brief interventions
• Strengthen the referral chains and follow-up of women at risk of AEP to ensure continuum of care
|Awareness raising and
|• Build capacity in key categories such as teachers and religious leaders to be
able to educate people on the prevention of FASD
• Include FASD prevention messages in other campaigns and services where relevant
• Build capacity in key categories such as teachers, social workers, and police, to understand and support families with a alcohol-related FASD member
|Liquor controls||• Consider diagrammatic warning messages on alcoholic beverages + standard drinks
• Improve the testing of all alcoholic beverages and the removal of those found with unacceptable levels of various chemicals
• Improve the enforcement of liquor serving controls i.e. not to pregnant or breastfeeding women, and youth under 18 years.
• Introduce universal training of liquor sellers on strategies to prevent alcohol
• Integrate substance abuse prevention activities with broader poverty alleviation
programmes and life skills programmes
• Use positive role models to convey messages of hope and success especially in areas seriously affected by substance abuse.
|Research Gaps||• What screening tool should be introduced across the country?
• What is the ideal number of brief sessions with women at risk of AEP, and who should deliver this?
• How can screening and brief interventions for substance abuse are integrated into other health programmes such as VCT?
• In what way can the partner or other family member be incorporated into the brief interventions?
• How can specialist rehabilitation services be made more appropriate and locally available to the highest risk women/ families?
• What role could religious leaders play in the prevention of FASD?
• What training needs to be provided to Educare and school teachers to enable them to support the needs of FASD learners?
• What support needs to be provided to families with a FASD member in order that they reach their potential?
The Foundation for Alcohol Related Research (FARR)
The Foundation for Alcohol Related Research (FARR) is the leading NGO source of research and information on Fetal Alcohol Spectrum Disorders (FASD) and the most severe form of this disorder, namely Fetal Alcohol Syndrome (FAS) in South Africa. Since 1997, FARR has been dedicated to building positive futures in South African communities by significantly reducing birth defects and mental disabilities caused by alcohol consumption during pregnancy.
FARR has become a hub for experts, community workers and everyday South Africans who are determined to improve the lives of those affected by FAS, their families and caregivers. In addition, FARR is involved in training, education, research, prevention, support and management projects across South Africa. Our specialists are trained to diagnose FAS and offer support for these children and their families.
Fetal Alcohol Syndrome is the most common preventable form of mental disability in the world! FASD is blind to who you are, where you are from and what you do. FASD can happen to any child whose mother drank alcohol when she was pregnant. It is common – more common that Down Syndrome, Spina Bifida and Autism combined! The damage to the unborn child is permanent and cannot be reversed! A large proportion of children with ADHD-like symptoms – a common behavioural disorder in all communities – could be attributed to alcohol consumption during pregnancy.
The burden of FASD on our society is being ignored in spite of the fact that it is far-reaching (socially and financially) and potentially 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 FAS for life is $1.4 million.
To date, FARR has completed or is involved in 23 FASD awareness and prevention projects across South Africa and has published more than 50 scientific articles.
You can join us in the fight to reduce FASD in South Africa, by subscribing to our newsletter or becoming one of our donors. Become a Friend of FARR and help us to increase FAS awareness and reduce the devastating effects of FASD on affected children, their families and communities.
FARR understands the far-reaching implications of FASD and the impact on people and communities affected by it. We strive to have long term sustainable impact by
Raising Social Awareness
Conducting World Class Medical and Psycho-social Research related to FASD
Conducting Prevention Programmes
Offering Training, Education and Mentorship Programmes
Offering Support Services
The following section outlines these areas of work in greater detail and is intended to give you a glimpse into our world.
The cost of any birth defect is more than the cost to prevent it, in other words: Prevention is more cost effective than management and treatment.
The usual number of serious birth defects in a community is between 1-3%. A serious birth defect we define as being a defect that causes a major hindrance to full capacity (a disability). FAS is thought to affect at least 3 million people in South Africa, with more than 6 million affected by FASD. What this tells us is that in South Africa, we could have up to 20% of our population affected by alcohol exposure during pregnancy. These statistics are not fully comprehensive because of the difficulty in diagnosing the lesser effects of FASD such as ARND (Alcohol Related Neurodevelopmental Defects)and ARBD(Alcohol Related Birth Defects).
It is estimated that FASD costs the USA over $6 billion (approximately R42 billion) every year. In South Africa, the burden of FASD will fall on the state and tax payers. The estimated burden of FASD on South Africa has not been calculated as yet, but we are aware the University of Cape Town is in the process of researching this.
In addition, South Africa is subjected to the usual pitfalls of all developing countries, which are exacerbated by alcohol and drug abuse and the resulting social ills and health burden. We at FARR call this the Wheel of Misfortune© (see pdf download on the right)
FARR is committed to increasing awareness of all South Africans about the importance of not drinking alcohol during pregnancy in order to ensure the birth of FASD-free children in our country. Should you wish to participate in, or find out more about upcoming FARR awareness programmes, please contact us on email@example.com
Do you require a Speaker?
Prof Denis Viljoen and Leana Olivier are FARR’s two main spokespeople. They have impressive track records that boast presentations at conferences both nationally and internationally. Should you require either Prof Viljoen or Ms Olivier, or a trained professional involved in the front line of our FASD prevention and intervention studies to speak at your event and would like more information please contact firstname.lastname@example.org
Please note that if you require a specific person to speak at your event that it would be best to book at least two months in advance.
When a pregnant mother drinks alcohol so too does her unborn baby.
Alcohol consumed by a pregnant woman, moves into her blood stream and is carried through the placental tissue that separates the mother and baby’s blood systems, delivering the alcohol directly to the developing tissues of the fetus. This alcohol is especially devastating for the baby’s brain development as the alcohol crosses the blood-brain barrier with ease.
The harmful (teratogenic) effects of alcohol can damage the fetus throughout pregnancy and are not isolated to a particular time of a pregnancy. The severity of the FASD depends on the quantity and timing of the mothers drinking during her pregnancy, together with numerous other factors such as: the mothers’ body mass index, age, food consumption at the time the alcohol was ingested, genetics, other drugs such as smoking, etc.
There is no known safe amount of alcohol pregnant women can drink without raising the risk of damaging their unborn babies. All pregnant mothers who drink alcohol are at risk of producing a baby with Fetal Alcohol Spectrum Disorder (FASD). Moderate to heavy drinking or binge drinking is associated with a mother having a baby with FASD. Heavy drinking is defined as an average of about two standard drinks per day during pregnancy and/or 14 drings per week. Binge drinking is defined as at least five standard drinks on any occasion. Of all the substances of abuse, including heroin, cocaine and marijuana, alcohol produces the most serious lifelong neurobehavioral damage to an unborn baby.
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 these disorders and the leading cause of preventable mental retardation in the world. The following features are required for making a clinical diagnosis by a trained clinician (medical specialist):
Small head size
Growth retardation before and after birth(height & weight)
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, babies/children with FASD may present with a variety of learning, behavioural and psychological problems without having any physical abnormalities.
Cape Town Head Office
37 Thornhill Road
Cape Town, South Africa
Telephone: +27 (0)21 686 2645
Fax: +27 (0)21 685 7034
Foetal Alcohol Syndrome
Interview with Fatima Desai
- Full name?
- Where in the Western Cape do you reside?
Pinelands, in Central Cape Town.
- How were you exposed or made aware of FAS?
Fatima was exposed to Foetal Alcohol Syndrome (FAS) after fostering her two sons. Initially, people asked her how it’s like to raise children with FAS, as she was not aware of it at that stage.
- What are names, gender, age and race of the children you have adopted with FAS?
Fatima adopted two brothers from Khayelitsha, Banele (8 ½) and Odwa (6).
- How long have you had the children? How old were they when you adopted them?
Banele was with his biological mother until he was five months old. He was born three months premature because of the HIV and the alcohol abuse and his mother abandoned him when he was five months old. A mitochondrial DNA test was done on the boy, which is a process of extracting mitochondrial samples of the mother from the child to see how much alcohol is in the child’s blood system.
Fatima first met Banele on the 15 of December 2005; she visited him for the next two years. He was then placed in the Sarah Fox Children’s Home and later transferred to Fikelela Children’s Home in Khayelitsha. He was about four and a half years when Fatima adopted him in January 2008.
- Why did you adopt them?
“I have always wanted to adopt Banele, it was always my intention to do that” Fatima said. After she met him in 2005, she decided she would adopt him late 2006. She saw that little Banele was lonely and had no one, and he wasn’t being visited by anyone.
The challenge at this time was that the Child Act had just been amended; the law was strict with foster children being adopted. After the amendment of the Child Act, the rights of the biological father came into play and it was possible for foster children to be adopted.
- Where are their parents?
Fatima was told that Banele’s biological father was deceased. His mother is permanently alcoholic; therefore it is difficult to get a decision from her. She cannot take oath in court as she is permanently drunk and the court procedure is held back because of this.
- What were the challenges you faced with the adoption? Both with the parents and government.The difference between fostering and adopting is rather significant. With fostering, the adoptive mother can still claim a child welfare grant. And sure enough Banele’s mother continued to collect the grant for him. For parents who are fostering, it is advisable to collect the grant money or give it away; this is because if the foster parents forfeit the money, there is a loophole for the biological parents to collect the money fraudulently. This primarily because the biological parents need the money to support their addiction i.e. alcohol. The foster children are exposed to financial abuse.
The boys’ biological mother disputed the adoption, which made it a section 19 adoption. Prior to the Child Amendment Act, the family of the foster child could dispute the adoption, wouldn’t go through as they had the right to the child. The amendment of the Act had then put the interest of the child first.
The children are now evaluated in terms of the bond with the biological parents(s) and the bond with the adoptive parent(s), this is to evaluate the chances the child has to re-integrate with the biological family, and if there is a slim chance, the law is inclined to place the child with the adoptive family.
After attempting to adopt her two sons, she only received the forms at the Goodwood Court in the beginning of March 2013 this has been approved by the Magistrate, which makes it a process of over seven years. The forms have to now be taken to the registrar of adoptions to be put up into the registry in Pretoria. Because the adoption is not through yet, she cannot apply for passports for them, as they are not legally hers yet. And in terms of the tax benefits, Fatima can only claim for medical benefits only. With children who are in between the fostering and adoption phase, they do not receive the full tax benefits that other children receive.
There is always a passing of the buck when it comes to child welfare; people tend to wash their hands when it comes to this. During her adoption process, Fatima found that there are not enough social workers handling that, there were only three social workers doing the job of nine people at the Gugulethu child welfare center.
“They told me he was not part of their jurisdiction, and I was not happy with that” Fatima expressed. Social development has washed their hands from this dilemma and not enough is being done to solve this problem. The support that was supposed to happen did not happen as it should, as Banele is a social development child, being transferred from the state to her care.
There were also cross cultural challenges as Fatima is of a Muslim background and the children are Xhosa.
The medical fund was also rather problematic.
- There are multiple medical disabilities that FAS children can be born with. Which do yours have?
Banele is HIV positive and terminally ill. He has six out of nine behavioural disorders, which are Attention Deficit Disorder (ADHD), dramatic mood swings (he could be the happiest person one minute and the most miserable the next), heightened aggression- FAS children cannot be disciplined the same as other children; “For instance if I raise my voice to them, will think I’m attacking them and they will attack back” Fatima shares. Flight or fantasy (which is a severe in FAS children as it lasts for longer periods at a time and they cannot snap out of it easily), babbling (as seen in people who are drunk) and a low IQ, therefore, Banele is classified as intellectually disabled. FAS children do not have a solid skeletal structure, and they are floppy. They have glassy eyes, sharp noses (which is unusual in African children).Fas children battle with grasping or rather gripping objects, much like a person who is drunk. They also show shakiness and cannot stand firm on their legs. They can be rather noisy because their vocal cords are not fully development for them to realise that they are loud.Fatima’s children also suffer from attachment disorder. Banele needs people around him all the time; he needs constant interaction with other people.Fatima explained that Banele struggles with mathematics, as the side of his brain that deals with numerical reasoning has been badly damaged from FAS.
“He struggles a lot with maths, but no so much with language, language he can do, but math is really a problem” she said.
- What are the day to day challenges of raising children with FAS?
There are not enough special schools for children like Banele, because they require speech therapy, physiotherapy, occupational therapy and psychological assessments on a regular basis. Fatima has the challenge of Banele still bed wetting; he was still in a diaper when he went to live with at eight years old. Due to the damage caused by FAS, Banele does not have the ability to realise when he needs to go to the toilet, Fatima has to physically carry him to the bathroom every night.
- What are the social challenges that they face every day?
People are not always accepting of people who are different from them. Other parents with ostracise children with FAS saying they do not want their children to plat with them because they are rowdy, however, this hasn’t been a problem for Fatima because she is socially accepted which has made it easy for her boys to be socially integrated, which is helpful for their self-esteem.
- The FAS statistics are growing rapidly, with the Western Cape registering the most cases of FAS in the country. Do you think the government is doing enough in terms of involvement and preventative measures? If not, what do you think still needs to be done to help eradicate this?
The government is afraid to classify it as a national emergency because of the cost factor it may bring to the system. This is because the medical practitioners that would be needed do not come cheap.
- What your community’s reaction to the adoption of your children?
There two categories of responses. The one was the people who thought she was a Saint and doing an incredible thing, and the other was of people who thought she was completely insane. Banele has become more accepted now because of that journey.
- What is the community doing, or how is the community involved in the fight against FAS?
There has been an increased level of awareness about the problem of FAS.
- Except adopting children with FAS, how else are you involved in the fight against this problem?
Trying to advocate to the World Health Organisation (WHO) to classify FAS as a disabling condition. If it could be classified as a disabling condition, the children with FAS will be entitled to the same level of attention, support and therapy as other disabled children. There is not enough being done in terms of awareness, education and democracy, there is still a very long way to go.Fatima would also like to lobby the constitutional court to separate between the reproductive rights and child rights.