Advocates and family members say building a better future for people with fetal alcohol syndrome will require breaking the stigma. (Pixabay)
A western Newfoundland woman said she knew at the outset that adopting children with fetal alcohol spectrum disorder would require her to constantly learn and adapt, especially as they grow older and encounter new issues.
When they were babies, one of her adopted children was colicky and cried inconsolably; the other was so quiet that it was worrisome.
One of the biggest challenges she worries about now is the stigma of simply having FASD, which is a lifelong disability caused by impacts on the brain and body of individuals prenatally exposed to alcohol.
CBC News isn’t identifying the woman in order to protect the family from that stigma, as one of the boys will soon be entering his teenaged years and the woman is concerned about his privacy.
She said it all goes back to a sense of shame perpetuated in society and a desire to place blame for FASD on birth mothers.
This mom by adoption says it’s time for it to stop, and that the stigma only makes it harder for people to get the help they need.
“We’re not ashamed of it. We adopted both boys, and we’re not ashamed of their parents,” she said.
“Being addicted to alcohol is a disease like everything else. And I’m sure there’s not a parent out there who planned on drinking during pregnancy.”
Sen. Mohamed Ravalia is a retired family physician from Twillingate. (Submitted by the Office of Senator Mohamed Ravalia)
Under his influence
Breaking the stigma of fetal alcohol spectrum disorder has become part of a crusade for a retired physician from Newfoundland and Labrador who sits in the Senate of Canada.
Sen. Mohamed Ravalia has proposed legislation, Bill S-253, to bring in a national framework for the diagnosis and treatment of FASD.
Fetal alcohol spectrum disorder is the leading neurodevelopmental disorder in Canada, estimated to affect four per cent of the population, according to the latest research.
Ravalia said diagnosing and treating children with FASD was an integral part of his medical practice in Twillingate during his years as a primary care physician there.
“I think the greatest challenge I faced was getting these children the appropriate access and supports that they needed,” said Ravalia.
He said obtaining a diagnosis was often a challenge in a rural community on the northeast coast, because the professional resources needed to assess a child were located several hours away.
A western Newfoundland woman said she knew at the outset that adopting children with fetal alcohol spectrum disorder would require her to constantly learn and adapt, especially as they grow older and encounter new issues. (CBC News)
Ravalia said he believes the stigma was also a factor in families seeking help because it can be difficult to acknowledge that alcohol consumption might be at the root of a child’s developmental delays.
“Alcohol is kind of part and parcel of our culture, and sometimes we don’t accept or recognize the risks until it may be too late,” said Ravalia.
Ravalia hopes that the bill he first introduced in 2021, which has been sent to a Senate committee for consideration, will become law and will help to streamline the process of getting a diagnosis and early intervention, in hopes of better outcomes for children and families.
Ravalia said the proposed legislation was developed through extensive consultation with the Canadian Fetal Alcohol Spectrum Disorder Research Network.
“We need to ensure that health-care providers are trained to offer non-judgmental support, recognizing that the goal is to prevent FASD without alienating the very people who need the help.”
Not left high and dry
Katharine Dunbar Winsor, executive director of the organization FasdNL, is understandably supportive of any efforts whatsoever to help improve life for people with fetal alcohol spectrum disorder.
Still, she said, it’s unclear to her exactly how a national framework would help because a one-size solution might not be the best way to tackle issues related to, or stemming from, alcohol use during pregnancy.
In Newfoundland and Labrador, for example, Dunbar Winsor said people can be encouraged by some positive strides being made, such as the FasdNL Diagnostic Network, which launched in 2023.
She said the network of 80 health-care professionals is working to fill previously existing gaps in access to diagnosis in the province, by reducing the need to travel long distances for assessment.
Katharine Dunbar Winsor is executive director of FasdNL, an organization that raises awareness and shares resources related to fetal alcohol spectrum disorder. (Submitted by FasdNL)
FasdNL also has online training available for families and professionals to learn more about fetal alcohol spectrum disorder.
Dunbar Winsor said one area in which work is needed is the support for help people with FASD as they mature through the teen years into adulthood.
She said it’s important to recognize that people with FASD are able to do well in life when they’re supported through that transition.
The adoptive mother of two boys with FASD, who spoke with CBC News, echoes those comments. She said she believes the biggest misconception is that her children and others with FASD just aren’t capable.
“They’re very capable … they just need that extra little bit of help,” she said.
“I just want them to be happy and well-rounded and to understand that nothing holds them back.”
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