Kath Meade exudes love. She's one of those people who makes you feel better just by meeting and talking to her.
She and her husband were reconciled to not having children of their own but ended up by chance fostering a baby girl whose birth mother had been a heavy drinker: a relative had fostered a child and the child's sister badly needed a home.
So Kath stepped up to the mark. And then fostering became adoption.
But as the baby grew older, Kath started to feel something wasn't quite right. The baby didn't sleep. It's true no baby sleeps conveniently for parents but this baby had very unusual sleeping patterns. She also had difficulty holding down food. She cried incessantly. It became clear the baby and then the toddler was a "high-needs child".
Endless visits to specialists led to a string of diagnoses, none of which quite added up. And then a nurse put two and two together and suggested the slow and problematic development of the child was because she had been subjected to alcohol in the womb.
Kath had never heard of fetal alcohol spectrum disorder. "I was a teaching aid so I was in a class helping children and I had never heard of it," she said.
"FASD is a lot more common than people realise. It tends not to be talked about."
In a severe form, FASD can distort the child's face but Kath's daughter does not have that symptom.
Part of the reason for the reticence, she thought, was unwarranted feelings of guilt.
"There's a lot of blame involved. To get diagnosed, the birth mum has to tell the doctors that they consumed alcohol during pregnancy which is a hard thing to admit if you have a problem with alcohol," she said.
"But it's also hard to admit that something you've done has caused an injury to your child.
"Women so often don't find out they are pregnant for several weeks into their pregnancy and so they may have been drinking while unaware they are pregnant. Our daughter's birth mother didn't know she was pregnant for many weeks into her pregnancy.
"We also need to help women who use alcohol to self-medicate by providing more support services to help them, especially while pregnant.
"It's about making people, especially women of an age where they could fall pregnant, aware of FASD."
The disorder will receive some attention on Monday when the National Organisation for Fetal Alcohol Spectrum Disorders plans to lobby Parliament.
It said there were more children born each year with FASD than with autism, spina bifida, cerebral palsy and Down syndrome combined.
"Evidence suggests that one in 13 pregnancies where there has been a level of alcohol exposure will result in FASD," it said.
There needed to be "greater education on what it called the leading cause of non-genetic disability in Australia".
Kath Meade agreed.
"We need to remember that alcohol consumed at any time during the pregnancy has the possibility of creating a lifelong problem for the individual," she said.
"The only problem is is that a lot of women don't find out they're pregnant until they are way along. And unfortunately, that's already long enough to cause damage.
"If that's happened, then we need to then provide those women and those families with support.
"Our daughter is doing really well as we knew her background and were able to get interventions and support in place early."
She feels she is fortunate in that her daughter's school in Canberra is very supportive. And the daughter herself is aware of what has happened. She has given talks in class about it. Teachers and pupils have sought advice.
The baby is also surrounded by the love of her mother and father.
Where to get help
- Consult your GP
- FASD Hub: fasdhub.org.au.
- NOFASD: nofasd.org.au.
- Helpline: 1800 860 613
