Office details:

Great changes for FARR began in 2006 with a move into the new premises at 37 Thornhill Road, Rondebosch. This move occurred after almost a decade as part of the Faculty of Health Sciences, University of Cape Town. The location is extremely fortuitous as it is adjacent to the Red Cross War Memorial Children’s Hospital and is in a quiet, easily accessible suburb.

De Aar

The Joan Wertheim Centre in De Aar

One of the major dilemmas of undertaking prevention/ intervention projects in communities in South Africa is the problem of sustainability in efforts once the project is completed. It is extremely difficult to convince a community whose “buy-in” and support is critical to the success of the project that sustainable improvements can be created. In De Aar the problem of “sustainability” of a Fetal Alcohol Syndrome Prevention Programme has partly been overcome through the establishment of the Joan Wertheim Centre, or “Die Pienk Huis” as it is commonly referred to.

The Wertheim family kindly donated their family home adjacent to the Willie Theron Primary School, to the Foundation for Alcohol Related Research (FARR). Discussions were held with the Mayor and Councillors of the Emthanjeni Municipality, and a memorandum of understanding was drawn up stating that: -

Without an empathetic approach to the communities for which the programme was designed to help, the full benefits and objectives could not be met. The Foundation for Alcohol Related Research was aware of the need to create a suitable and appealing environment, which would allow individuals to visit and discuss sensitive issues of alcohol use/abuse during pregnancy.  FARR’s identification of a building well integrated into the De Aar community proved invaluable in the success of the overall prevention programme.

The official opening of the Joan Wertheim Centre took place on the 5^th May 2004 with immense local community participation. The Centre still forms the heart of all prevention/ intervention work undertaken in De Aar and is perceived as a safe place where encouragement, advice, referrals, education, help and treatment can be received.

Farr De Aar Office Staff

De Aar Projects

Epidemiology Project

In 2002 FARR was invited by the local government to conduct FAS prevalence studies in the De Aar community. Of the 534 school entry, grade 1, children screened by a trained health worker, 354 were found to fall below the 10^th percentile and were clinically examined by trained clinicians skilled in recognising Fetal Alcohol Syndrome. Fifty-four (15.2%) children presented with features of full-blown Fetal Alcohol Syndrome, while 10 (2.8%) were diagnosed as having Partial FAS. The 120 per 1000 prevalence identified in the De Aar community were the highest worldwide reported rate of FAS. The neurodevelopment of children forming the study sample was also assessed to determine the presence of developmental delay, which may be related to prenatal alcohol exposure damage. Maternal interviews were also conducted on mothers of children with a FASD diagnoses to determine the maternal alcohol history during pregnancy. In order to break the cycle and uplift the community, prevention and intervention strategies were urgently instituted. The focus of the prevention project was on diagnosing FAS during infancy thereby decreasing the onset of possible secondary disabilities during the school going years.

Prevention Phase 1

In 2003 the first phase of the prevention study commenced with the following main aims-:  

Of the approximate 400 infants born annually in De Aar 394 families consented to being part of the phase one prevention project. Clinical diagnoses identified 19 (4.8%) full fetal alcohol syndrome cases, 24 (6.0%) partial fetal alcohol syndrome cases and 2 (0.5%) alcohol related diagnoses. These high prevalence figures of FAS amongst infants in De Aar, 114 per 1000, correspond with previous epidemiological rates of 120 per 1000 amongst school entry children.

 Prevention Phase 2

Phase 2 of the prevention project aimed at intensifying prevention programmes in De Aar. Awareness discussions were held weekly at antenatal clinics in all areas of the De Aar community. Individual follow up was provided, by trained community workers, to families with children identified as having FASD or being at risk of producing a child with FASD. All children with FASD were referred to local remedial services such as: occupational therapists, physiotherapists and speech & hearing therapists to stimulate their overall development. The growth of infants with weights below the 10^th percentile were monitored by the nutritionist, providing extra nutritional supplements if needed.

Prevention Phase 3

In 2005 another birth cohort of infants was examined to re-assess infant prevalence rates in De Aar. 0f the 304 infants who consented to being part of the study, clinical diagnoses identified 8(2.6%) full blown Fetal Alcohol Syndrome cases, 8 (2.6%) Partial Fetal Alcohol Syndrome cases and 1 (0.3%) alcohol related diagnose. Phase 3 prevalence rates of 55 per 1000 show a decrease in the diagnosis of FASD amongst infants, when compared to Phase 1, which may be as a result of the prevention/intervention activities conducted during Phase 2.

Funding and support to conduct the above mentioned prevention project was obtained from The Centre for Disease Control (CDC) in Washington, D.C, USA.

Longitudinal Follow-Up

In an attempt to follow families identified in Phase 1 through to early childhood a longitudinal follow-up study was initiated. In 2007 families with infants identified as having FASD from the Phase 1 project, now 5 years of age, were invited to form part of the first longitudinal project of it’s kind both locally and internationally. Of the 136 children followed through to 5 years of age from Phase 1, 30 were diagnosed as FASD (22%) while the other 106 received a non- FASD diagnosis. Neurodevelopmental assessments were conducted on the 136 children and analysis of the data is currently underway.

Funding & support to assess these children was obtained from The Transnet Foundation, Johannesburg, South Africa.

Healthy Baby, Healthy Pregnancy Project 

The need to educate & inform pregnant mothers of the dangers around drinking alcohol, prior to the birth of their child is essential in decreasing the FASD prevalence rates in De Aar. In 2008 FARR will commence with the health baby, healthy pregnancy project, which aims at identifying women (at 20 weeks pregnant) using and/or abusing alcohol during their pregnancy and offering them brief intervention counselling sessions and follow-up in an attempt to decrease their alcohol usage and improve their overall health during pregnancy, while modifying their behaviour for current and future pregnancies. A clinical evaluation and neurodevelopmental assessment will be conducted on the infant at 8-11 months of age to determine the prevalence of FASD amongst infants whose mothers received intervention programmes during pregnancy.

Above: group session taking place with the community worker

Above: Individual session taking place with the community worker

Thera-Play Room in De Aar

Neurodevelopmental research conducted by FARR in De Aar, during 2007, proves that children with Fetal Alcohol Syndrome (FAS) exhibit delays in various scales of their development, namely gross motor, personal and social, eye-hand coordination and general performance. However all children taking part in the research projects, regardless of their FASD diagnoses, prove to be under stimulated and would greatly benefit from programmes that would stimulate their senses, development and growth.

Ceres

2007 – Phase I

Together with Dr Sandra Marais of the South African Medical Research Council (SAMRC), a grant proposal was written entitled “Prevention of Fetal Alcohol Spectrum Disorder through Brief Interventions for pregnant women: a randomized clinical trial”. This was successfully submitted for funding to the Department of Social Development, Western Cape Provincial Administration. The aim of the project was to assess the impact of social brief interventions on the drinking behaviour of a group of pregnant women. Approximately 100 women and controls were recruited in Phase I of the study and subjected to AUDIT screening for alcohol and substance abuse. Brief interventions were then instituted on several occasions to heavy-alcohol consuming women during their pregnancy by trained personnel. Phase I of the study has been completed and data analysed and presented at both International and Local Congresses. The interventions appear to have impacted lastingly and reduced drinking markedly in the cohort.

2008 – Phase II

In Phase II of the project, mothers and their children of approximately 9 months of age were appraised for signs of FASD. Again the project was funded by the Department of Social Development, Western Cape Provincial Administration. The nutritional, anthropometric measurements and neurodevelopmental aspects of each child was carefully assessed. Approximately 100 infants have thus far been evaluated and their growth, development and any stigmata of FASD evaluated. Although not yet completed, assessments of the children and their mothers have demonstrated excellent growth, bonding and care given by the mother to their offspring.

Upington

The official opening of the Centre took place on the 7 September, 2006. The MEC for Social Development, Mr Goolam Akharwaray, was the guest speaker. He was accompanied by Ms November (Speaker for the Khara Hais Municipality) and Ms Leana Olivier, National Manager of FARR, in formally opening the Upington FARR Centre. Representatives from national and local government, several professionals within Upington, NGO’s and members of the community participated and attended the Opening. The opening of the Centre was to encourage community involvement and was used as a platform to provide information about Fetal Alcohol Spectrum Disorder.

Epidemiology Project

During 2003, FARR initiated an epidemiological study in Upington to assess the prevalence of FASD amongst school entry, grade 1 children and to compare the rates to those of De Aar and Gauteng. Of the 1254 children screened by a trained health worker in Upington, 744 (59.3%) were identified as being below the 10^th percentile on height, weight or head circumference. These children received a clinical examination conducted by a trained clinician skilled in diagnosing Fetal Alcohol Syndrome. Clinical diagnoses identified 69 (9.2%) full Fetal Alcohol Syndrome cases and 28 (3.7%) Partial Fetal Alcohol Syndrome cases with the overall presence of FASD in Upington reaching 77 per 1000.

Prevention Phase I

In 2006 the first phase of the prevention study commenced with the following main aims-:

In Upington 411 families consented to being part of the phase one prevention project. Clinical diagnoses identified 20 (4.8%) full fetal alcohol syndrome cases, 27 (6.5%) partial fetal alcohol syndrome cases and 2 (0.4%) alcohol related diagnoses. With FASD prevalence rate’s, amongst infants, in Upington reaching 119 per 1000 the enormity of the FASD problem I South Africa sets in proving that there are many towns in South Africa where Fetal Alcohol Syndrome presents itself.

Prevention Phase II

Phase 2 of the prevention project aimed at intensifying prevention programmes in Upington. Awareness discussions were held weekly at antenatal clinics in all areas of the Upington community. Individual, follow up was provided, by trained community workers, to families with children identified as having FASD or being at risk of producing a child with FASD. All children with FASD were referred to local remedial services such as: occupational therapists, physiotherapists and speech & hearing therapists to stimulate their overall development. The growth of infants with weights below the 10^th percentile were monitored by the nutritionist, providing extra nutritional supplements if needed.

Prevention Phase III

During 2007-2008 another birth cohort of infants was examined to re-assess infant prevalence rates in Upington. The clinical findings are currently being analysed and FASD prevalence rates will be posted as soon as possible.

·     Due to a lack of funding all the projects at this centre have been put on hold until FARR manages to secure funding to continue. Sponsorships to continue with the project are urgently needed. 

Ashton

This centre is fully equipped, but still not in operation due to a lack of funding.  FARR is planning to offer similar programmes as in De Aar in this centre.

Contact Information

Telephone:  +27 (0) 21  686 2645 /6/7

Fax:  +27 (0) 21  685-7034

Postal address

Electronic mail

CEO : Leana Olivier

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Copyright © 2008 Farr
Last modified: April 20, 2010.