Educating the world about FAS

2018-09-21 10:52
Vivien Lourens with her adopted daughters, Tisha and Carrie. Photo: Nicole McCain

Vivien Lourens with her adopted daughters, Tisha and Carrie. Photo: Nicole McCain

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“Foetal alcohol syndrome (FAS) is 100% preventable and 100% irreversible.”

This is the message that Vivien Lourens, founder of the FAS Information Centre, wants to sends out into the world.

Educating herself, and others, about FAS has been a long journey for Lourens, which started when she fostered a 10-week-old baby who had FAS, named Tisha, in 1996.

Lourens had always wanted to foster children, and when her oldest son moved out of the house, she thought it might be a good way to ensure her youngest son didn’t grow up as an only child. She became an emergency foster mother, often being called on to take care of babies and young children while social workers searched for a more permanent solution.

Tisha was one of these babies, with one difference: Lourens had never taken care of a child with FAS.

“I got her on Friday and she wouldn’t feed. When I phoned the maternity hospital to tell them she wasn’t feeding, the nurse told me not to worry, because she wouldn’t last the week and they’d only sent her to me because they needed the bed space.”

But Lourens was determined that this baby, weighing only two kilograms and wracked with the shivers caused by withdrawal, would not die.

“I was determined. There was no way she was going to die. You should have seen that smile … she had the biggest smile.”

Lourens says she was “clueless” about FAS but decided to adopt Tisha after social workers informed Lourens that Tisha would have to be placed in a children’s home.

Finding herself with no information and little support, Lourens decided she would make the road easier for those also raising FAS children, and in 1996 she started the FAS Information Centre. The information centre focuses on educating teachers and caregivers.

“I get calls at least once a week,” she says.

Along with organisations in Canada and the USA, Lourens started the annual awareness day for FAS in 1999. They chose the ninth day of the ninth month, to represent the nine months a woman is pregnant.

“The first year, we were a small group. The next year, we were more and again the year after. It’s just grown and now we have conferences and awareness events.”

South Africa’s prevalence of FAS is 14 times higher than most other countries. FAS is between 30 and 50 times more common than Down syndrome. In 2016, a study published by the Foundation for Alcohol Related Research (FARR) in the South African Medical Journal found foetal alcohol syndrome disorder (FASD) rates in South Africa range from 29 to 290 per 1000 live births.

In an interview with People’s Post’s sister publication TyberBurger (“Los die sopies as jy vermoed jy kan swanger raak”, 11 July), Leana Olivier, executive director of FARR, says that even the smallest bit of alcohol, drunk before a woman realises she’s pregnant, can have harmful effects on the baby.

“There is still the misconception that a woman should be an alcoholic or a very regular alcohol consumer for her to have a child with foetal alcohol syndrome,” says Olivier.

With around 78% of pregnancies unplanned, this type of drinking can cause lasting damage to the unborn child, as most of the organs are formed during the first trimester­. Oliver adds that misconceptions about alcohol use during the first few weeks of pregnancy mean many are blind to the fact that their child has one of the spectra of foetal alcohol disorders (of which FAS is only one) and often FAS is hidden in other diagnoses such as attention deficiency disorders (ADD).

The stigma attached to FAS means that many mothers are unlikely to admit to drinking during their pregnancies, Lourens believes, which could result in misdiagnosis­.

She has firsthand experience of this, with another of her foster daughters, Carrie (27), only recently being diagnosed with FASD.

Lourens adds that around two thirds of the children she has fostered have had “some degree” of FASD – a number she would put at around 100 children.

“A mom feels guilty that she’s hurt her baby. It can happen to anybody, if you’re sitting on the side of the road or in Constantia. In Constantia, it might just be diagnosed as ADD or autism instead of FAS,” she says.

“It’s a difficult subject to talk about with pregnant women.”

But despite the odds, those living with FAS can lead normal and productive lives, Lourens explains. Both Carrie and Tisha, who is now 22 years old, are employed at a Pinelands business.

And Lourens says she’s noticed a gradual shift in society. “More people know about [FAS] now. FARR has seen a lot of changes, along with the Pebbles Project [which works with expectant mothers on farms in the winelands],” she says.

“And the community has been marvellous with all our foster children.”

For more information, email Lourens at fasinfocentre­@­mweb.co.za.

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