A lack of awareness of the harm of drinking whilst pregnant as well as the prevalence of FASD in New Zealand may be causing pregnant women to consume alcohol. Photo / 123rf
A lack of awareness of the harm of drinking whilst pregnant as well as the prevalence of FASD in New Zealand may be causing pregnant women to consume alcohol. Photo / 123rf
Major landmarks will be lit up red for Fetal Alcohol Spectrum Disorder (FASD) International Awareness Day on Monday.
In New Zealand, there is ongoing concern about the lack of awareness of the harm caused by drinking whilst pregnant and children with FASD not getting support in schools.
Whanganui resident Susan Edgecombe cares for her 13-year-old grandson with FASD regularly.
It first began showing up as a baby when he was slow to crawl, walk and experienced disruptive sleep patterns.
As he grew older this transformed into impulsive and erratic behaviour and meant he could only be in school for a couple of hours each day.
“It just takes 10 times longer to teach them something – do you know the movie Groundhog Day? It’s a bit like that it’s just repeat... repeat... repeat.”
Behaviours such as washing his hands after going to the toilet or doing up his own seatbelt had to be constantly retaught.
An NZ Institute of Economic Research (NZIER) report estimated that FASD was costing New Zealand $4.8 billion per year.
Fetal Alcohol Spectrum Disorder (FASD) Care Action Network CEO Stephanie James-Sadler says some doctors still think it's okay to have a couple of glasses of wine when you're pregnant.
Fetal Alcohol Spectrum Disorder (FASD) Care Action Network CEO Stephanie James-Sadler said an estimated 3-5% of babies were born with FASD.
The issue was exacerbated by the nearly 50% of Kiwi women who had unplanned pregnancies and might consume alcohol unknowingly.
“Any amount is harmful, it is pretty much like Russian roulette,” James-Sadler said.
“Some women do have a glass or two and their baby is born okay, and then the next person has just one glass with their friend and their baby isn’t.
“The saddest thing is that some doctors still think it’s okay to have a couple of glasses of wine when you’re pregnant.”
Edgecombe said mums were often blamed when, the majority of the time, FASD was the result of a lack of education.
“There are still doctors out there, and I’ve even heard of a midwife recently who said during an antenatal class the odd drink was fine.
“It’s not.”
Whanganui GP Dr John McMenamin, who was part of a working group developing FASD guidance for health professionals, said the evidence-based recommendation was that there is no known safe amount to drink during pregnancy.
He said primary care health teams and midwives can support mums to be alcohol-free in pregnancy.
“It is somewhat hidden in the community and more awareness and therapy is needed.”
In April, the government announced five new initiatives to tackle FASD which include training 30 health professionals. Over $2 million is currently dedicated to the delivery of these initiatives.
The Ministry of Health said in a statement that all initiatives were on track to be delivered as planned.
Training for up to 30 Child Development Service professionals has been initiated with a current priority in Hawkes Bay, Taranaki, Wellington, Nelson, Christchurch, and Northland.
Despite being twice as prevalent as autism spectrum disorder, there is little awareness of FASD in schools.
Parents of children with FASD struggle to get any funding because it does not meet the criteria for the Disability Support Service.
James-Sadler said getting a diagnosis for FASD was difficult due to a limited number of clinicians and a two-year wait list, with the cost of being diagnosed privately up to $9000.
Edgecombe said FASD was like a “big flashing neon sign” that prevented disability funding from being given to a child.
After battling for many years, Edgecombe managed to secure Ongoing Resource Scheme funding for her grandson and trauma therapy which helped with his aggressive tendencies.
“The day they rung me and told me that he had it [Ongoing Resource Scheme funding] I was outside and I just sat down on the footpath and cried... the difference it made to my life.”
James-Sadler said FASD presented differently in individuals and could affect sensory or cognitive functioning as well as physical functioning, but often children weren’t diagnosed until 12 years old or above.
