Sobriety the best medicine
Fetal Alcohol Spectrum Disorder (FASD) describes the lifelong developmental impairments that can result from exposure to alcohol in the womb. Alcohol consumption during pregnancy is associated with a range of adverse consequences including miscarriage, still or premature birth, low birth weight and FASD.
According to Australian Government figures, FASD effects about two per cent of babies.
“In our culture, alcohol is so prevalent and there is a lot of pressure, so it helps a lot to have supportive family and friends,” said GV Health FASD Clinical Coordinator Kim Cowen. “People think a couple of glasses here and there during pregnancy is okay, but there is no risk-free amount. It’s better to be safe, as the potential damage lasts for a lifetime.”
The GV Health FASD clinic is the state’s first dedicated treatment facility.
Opening on 27 July this year, it includes a multidisciplinary team made up of a Neuropsychologist, Speech Pathologist and Paediatrician.
The clinic has obtained Commonwealth Government funding to operate six sessions a year into 2020, and can accept referrals up to 16 years of age.
“We were fortunate enough to get funding through PATCHES in Western Australia, which is led by Dr James Fitzpatrick,” said Ms Cowen. “Dr Fitzpatrick secured federal funding, with the goal of establishing a FASD clinic in every state in Australia. Shepparton is Victoria’s.”
PATCHES delivers child development, disability and early intervention services with government and non-government providers. It also runs FASD programs in the Pilbara, Adelaide, Hobart and Darwin.
Previously, patients would need to travel to Melbourne or attend multiple appointments locally to secure a diagnosis. The GV Health clinic provides a one-stop shop range of services to diagnose and assess children who may be affected by FASD.
While FASD appears in all levels of society, research has found that it is more common in Indigenous communities and in rural areas that have less access to resources.
The level of harm to a child with FASD is dependent on the volume and regularity of alcohol use. It can also be influenced by factors such as intergenerational alcohol use by either parent, parents’ age and the general health of the mother, including environmental factors like stress and poverty.
The majority of children and adults who have FASD live with significant, lifelong cognitive, behavioural, health and learning difficulties.
Positive outcomes can be achieved when parents are appropriately supported to understand their child’s behaviour as a symptom of brain damage.
“It’s a full day of seeing specialists to get a diagnosis, which is much easier to do in Melbourne,” said Ms Cowen. “The clinic is a one-stop shop, which makes it much easier to help regional families in the hospital setting.”
Belinda Fordham is full time carer and grandma to Rachel and Luke (not their real names), both of whom were recently diagnosed with severe FASD.
Ms Fordham has cared for the twins since they were eight weeks old.
They are now six years of age.
Every FASD diagnosis is different, meaning that treatment varies from case to case.
FASD tests measure 10 developmental brain domains, which involves an assessment for each area.
In Belinda’s case, her twins have limitations in different domains to each other.
“Rachel’s FASD is mainly anxiety oriented, while Luke’s is Attention Deficit Hyperactivity Disorder (ADHD),” said Ms Fordham, who learned of the clinic through a friend in Tatura. “I went to the doctors and got the forms, filled them out and we went from there.”
Ms Fordham brought her grandchildren to the clinic for a full day of assessments with Ms Cowen and GV Health’s clinical director of paediatrics Dr Dan Garrick.
FASD often goes unnoticed until a child reaches school age.
It’s then that behavioural and learning difficulties become more apparent.
“I’d known they had symptoms for a while, but we needed to get them properly diagnosed,” said Ms Fordham. “Everyone here is absolutely fantastic, they’ve kept in touch throughout – it’s beautiful.”
After a full day of assessment at the clinic, families receive a comprehensive report.
“It’s a bit of a novel,” said Ms Fordham. “I pass all the documents on to the kids’ school – the teachers have been amazing. There’s been so much community support, even though most people don’t know much about FASD.”
Children with FASD can typically have short term memory problems, experience trouble regulating their own behaviour and can find abstract concepts like time and money difficult to understand.
Other symptoms can include a lack of a sense of risky actions having dangerous consequences and an absence of gross motor skills.
“FASD is an invisible disability,’ said Ms Cowen. “The children look like everyone else, but can’t operate at the same level. It can vary a lot – some may have a low IQ, others a completely regular one.”
Alcohol can cause damage to an unborn child at any time, even prior to a pregnancy being confirmed.
“One of the important things to note is it’s not just during pregnancy, but also if you’re planning one,” said Ms Cowen. “Harm can take place in the early weeks when a woman is potentially unaware of being pregnant.”
Ms Fordham is passionate about raising awareness of FASD in the community while spreading the important message of not consuming alcohol during pregnancy or breastfeeding, while she herself leads by example.
“I don’t drink and I don’t have any alcohol in the house whatsoever,” she said. “I’m doing this by myself while working and running my little farm in Tatura. Some days can be hard, others can be good – the kids have a limit to their ability to remember things, which can make it challenging.”
Ms Cowen says that her current aim is to raise awareness of FASD and the support services available to the local community through the clinic.
“Get in touch and talk to us, it’s not an awkward thing at all. People want to know what’s best for their child. The message is that FASD is a no blame situation - we understand that women have made mistakes and drunk throughout pregnancy. No one consciously makes the decision to harm their unborn baby - there’s no judgment, it’s just about support.”
“We take each day as it comes,” said Ms Fordham. “There is support out there, especially if you have a good paediatrican. If I ever need anything I ring the NoFASD help line. I’d love to see a support group for parents and grandparents to get together, have a cup of tea and take care of each other. We’ve all got to take care of these kids.”
GV Health’s FASD clinics are run bi-monthly. The next clinic will be on Thursday 6th December.
For more information contact FASD Clinical Coordinator Kim Cowen via email@example.com
For referrals to the GV Health FASD clinic email firstname.lastname@example.org
The National Organisation for Foetal Alcohol Syndrome (NOFASD) is a support group for parents and carers of children with FASD. Visit nofasd.org.au for more information.