When the bells toll worldwide on the ninth minute, of the ninth hour, on the ninth day of the ninth month, one northern suburbs family will join in the commemoration of Fetal Alcohol Syndrome Disorder (FASD) Day.
On Monday September 9, FASD Day will be commemorated when groups of people will get together at 9am to share a FASD prevention message.
At 9.08am one minute of silence is observed, with the participants reflecting on people who are living with FASD as well as their parents and caregivers.
At 9.09am a bell is rung to ceremonially break the silence, thereby encouraging community members, family and friends to share the FASD prevention message and to support pregnant women to abstain from alcohol use during pregnancy.
The number 9 is a reminder of the importance of nine alcohol-free pregnancy months.
For a Parow family it’s a reminder of the months their daughter’s birth mother did not abstain from alcohol, resulting in her being born with FASD.
Nicky*, now 19, was found at just a few hours old with alcohol in her baby bottle.
Social workers removed her and she spent a few days in hospital before being fostered by Karen* and her family.
They eventually adopted the little girl and had not for a moment doubted her potential – despite her rocky start.
“We had two children of our own, but we didn’t hesitate to take Nicky. We knew from the outset it wasn’t going to be easy and the first year was the hardest as Nicky struggled with alcohol withdrawal symptoms. She was our little girl from the start so it was a no-brainer to adopt her three years later,” Karen says.
Karen made sure Nicky knew her roots.
“She knew she was adopted and how she came to be a part of our family. Nicky is a confident young woman who can tell her own story. Earlier this year she made a speech at her sister’s wedding and there wasn’t a dry eye in the church.”
Nicky says her roots don’t define her.
“Mom talked to me about it, but I never felt separate. I was a part of their family and I got the hidings along with the others,” she laughs.
Nicky is a confident Grade 11 pupil with a brown belt in karate and is an avid indoor rock climber. That is when she’s not playing piano or doing hip hop dancing.
Nicky hopes to find a career in tourism.
“I enjoy languages because I’m good at it. I want to learn more about my own country and share it with visitors.”
Karen says they’ve had to learn so much more about FASD and are hosting support groups for parents and caregivers in similar circumstances.
“I always believed she was capable of doing anything she set her mind to. As with all children, what she needs is discipline, structure, routine and stimulation and a family to have confidence in her.”
Dr Leana Olivier of the Foundation for Alcohol Related Research (FARR) says much of Nicky’s achievement is due to the support and opportunities provided by her family.
“People with FASD can be affected in many ways and all have some form of brain damage.
“Since hyperactivity is a common symptom, Nicky’s participation in karate helps her to focus, strengthen her muscle tone and gives her an opportunity to put her excess energy to very positive use,” explains Dr Olivier.
Fetal Alcohol Syndrome (FAS) is the most severe form of FASD, but there are a variety of other conditions as well.
She says Karen is an excellent example of a parent who paves the way for a child with FASD who “needs lots of support, security (boundaries), routine and positive reinforcement”.
“With this in place the child can be assisted to reach her full potential. It is a lonely and difficult journey for the parents with limited guidelines and support,” added Dr Olivier.
The road ahead for Nicky and Karen remains fraught with challenges.
“Behavioural traits (associated) with FASD, as in Nicky’s case, is a lifelong condition and reality. People with FASD often find it difficult to understand cause and effect and for this reason they engage in risky behaviour.
“Due to problems with impulse control they might also present with mood swings or emotional outbursts and often fall prey to exploitation.”
FARR assists as much as possible.
“We have 12 project sites in the Western, Northern, Eastern Cape and Free State provinces where we have a variety of programmes for parents/caregivers and family.
“They receive information, counselling and guidance on how to manage their children and we also provide training to the educators of these children and at all the schools in the project area.
“This is in addition to the training given to the social workers and health professionals working with the affected children, as well as other children with developmental and learning problems.”
FARR provides support to pregnant women at their project sites and has a private clinic at their head office in Bellville where they offer full medical, psychometric and counselling services.
Dr Olivier says FASD is prevalent in all areas, socio-economic, cultural and religious groups.
“Due to the very high prevalence rates in South Africa, FASD is a public health concern in many communities. Unfortunately, very little education is given to students in the health, education and social work sectors. It is essential to raise awareness, but professionals should receive the necessary training and skills to do diagnose and manage FASD and to implement awareness and prevention strategies,” says Dr Olivier.
You do not need to be a heavy drinker or an alcoholic to have a child with FASD. International and FARR’s research have shown even small amounts of alcohol can cause FASD.
Dr Olivier says there has been an increase in international concern regarding the stigmatisation of women of childbearing age and mothers of children with FASD.
“It is important to note that women often experience pressure to use alcohol during pregnancy. Incorrect and misleading messages from health staff regarding the effect of prenatal alcohol use cause confusion and often contradicts the important message that no amount of alcohol is safe during pregnancy.
“Women also report they often use alcohol as a form of self-medication to alleviate stress and to escape from daily hardships,” explains Dr Olivier.
She also emphasised that facial features are no longer used as a means of identifying children with FASD.
“Close to 70% of people with FASD do not have any facial or physical symptoms. In our multicultural society many of the previously typical facial features of FASD are common and normal,” said Dr Olivier.
FARR’s research indicates the Western Cape remains one of the provinces with the highest incidence of FASD while FAS
affects more children in South Africa than anywhere else in the world.
“In areas where we are operational and implementing the Healthy Mother Healthy Baby Programme, the rates are dropping. Despite this the SA rate is at least 14 times higher than that of the rest of the world with FAS prevalent in 111 per 1 000 children,” says Dr Olivier.
For information about their services or support groups, call 021 686 2646.
For more information about FASD, FARR’s research, projects and/or the International FASD Day events, you can visit their web page at www.farrsa.org.za
*Not their real names