OPINION: Let’s protect our children

KELLY Smythe* retrieves a photo from her handbag and places it on the table. It captures her smiling foster child Joshua* in his school uniform. He looks like any cheeky primary school student; cropped hair and a mischievous glint in his eyes.

"He's friends with everybody," offers Smythe. "He's very loveable and bubbly. He's our little Tigger who bounces around everywhere."

Smythe and her husband first met Joshua in the John Hunter Children's Hospital neonatal intensive care unit. He was born prematurely into chaotic and destructive family circumstances, and was removed from the care of his mother almost immediately.

The Smythes, who have children of their own, had heard that there was a desperate need for foster carers in the Hunter, particularly for newborn babies. "We'd never considered a baby, but we thought that it could work," says Kelly, a warm, friendly presence in the near-empty cafe. Two weeks after they completed the screening process they received a call from a caseworker asking if they could care for Joshua. "It's an amazing thing to be able to take a child into your arms that isn't biologically yours and to love them," says Kelly.

What the unremarkable school photograph doesn't convey is the impact of a complex disorder that damaged Joshua's brain when he was in his mother's womb. When Kelly held him for the first time, she had no idea that Fetal Alcohol Spectrum Disorder (FASD) was in their future and was ill-prepared for its far-reaching impact.

For the first six months, Joshua screamed a lot - far more than any of Kelly's other children had when they were babies. He wasn't reaching any of the standard milestones and had an oral aversion, which meant he constantly gagged on food and struggled to gain weight. Joshua didn't comfortably eat solids until he was 18 months old, almost a year after most children.

When an increasingly concerned Kelly discussed Joshua's developmental issues with medical staff, they attributed it to his being born prematurely. As he got older, his behaviour became more erratic. "He'd hit you and then turn around and hug you," says Kelly. "He's not able to self-regulate. It's a roller-coaster with him. He goes from a loving, gorgeous little boy to screaming and hitting in seconds. There's no build-up, it's just bang!"

When Joshua was four, a psychologist raised the possibility of FASD for the first time. "I'd never heard of it before," says Kelly, even though up to 60 per cent of children in out-of-home care are thought to be affected by FASD. "The psychologist specialised in treating kids with autism and that's what we thought the issue was. I googled FASD and thought, OK, it makes sense."

Fetal Alcohol Syndrome was identified in medical literature in the 1970s, though it had been observed long before that because children affected by the syndrome have distinctive facial features - wide-set eyes, an exceptionally thin upper lip, a short, upturned nose - as well as heart defects and low birth weight. FASD is the umbrella term and represents a spectrum from mild to severe, with Fetal Alcohol Syndrome at the severe end.

FASD is a complex medical and social disorder and requires a complex assessment by highly trained paediatricians, psychologists and speech pathologists. Children at the mild end do not necessarily have physical signs of the disorder.

"A lot of people wouldn't think there was anything wrong with Josh because he could appear just to be a naughty kid," says Kelly. "Once you understand that it is brain damage, you do wonder how many kids are being misdiagnosed or are falling through the cracks."

IN a nondescript room at the Police Citizen's Youth Club in Broadmeadow, representatives from education, health, policing, and welfare services sit at tables arranged in a horseshoe to listen to the straight-talking CEO of the National Organisation for Fetal Alcohol Syndrome Disorders (NOFASD), Vicki Russell. "We understand what alcohol dependence looks like," she says."We know how it affects our brains and we need to translate that to the vulnerability of the fetal brain.

"One of the best ways to understand FASD-consistent behaviours is that they don't seem to be ameliorated or get any response with traditional interventions," she adds.

Russell has that washed-out, bleary-eyed appearance common among dedicated community advocates who rarely clock off. She is at the meeting at the invitation of the voluntary convener of the fledgling Newcastle FASD working party, Tony Brown, the well-known activist and chairperson of the Newcastle Community Drug Action Team (CDAT). The working party is focused on developing a grassroots FASD preventative strategy in the Hunter that can be replicated across the country.

"It's an invisible disability," continues Russell, "and it is lifelong. As adults, people with FASD have real difficulty maintaining employment, but can be very articulate. They can get jobs, but can't keep them. They have poor memory and problems managing money. They misread social queues. They don't get sarcasm or innuendo. They often struggle to have proper friendships, they have depression, suicidal ideation, abuse drugs and alcohol. The neural developmental impairment is permanent."

Most people in the room have stories about children they deal with everyday who seem to be affected by FASD, but these same people readily admit that they don't have a proper understanding of the disorder or how to effectively assist affected children and their families. A doctor mentions that there is limited training in the area and awareness about the disorder among her colleagues is patchy.

United States research indicates that up to 5 per cent of the population there is affected, which if applied to Australia equates to between 500,000 and 1.12 million people. Until now, a national prevalence study has not been completed but the Australian Paediatric Surveillance Unit (APSU) is overseeing one. It will provide, for the first time, more complete data specific to Australia.

The estimates are confronting enough, which is why the lack of awareness among professionals who work with at-risk children is startling - but not unique to the Hunter.

"I started this journey 12 years ago when someone came into my surgery and said, 'I've got two foster children who I think have FASD and at that point I didn't know that much about it," says paediatrician Dr Doug Shelton, one of Australia's leading specialists in the area. "They very patiently started me on a journey to find out more about it.

"Once I knew a bit, I realised me and my team needed more training and so I thought we could go to Sydney or Melbourne but there was nowhere at that point where you could receive extra training. The Queensland government in their absolute wisdom sent seven of us to Vancouver to get trained because that was the closest place."

Dr Shelton is the medical director for children's health with Gold Coast Health. He likens the impact of FASD on a developing foetus to taking a shotgun to the genes. "What I mean by that is the effect isn't subtle," he says. "It's not like it just affects one or two genes. It affects lots of genes. We are so far behind in terms of being able to service the needs of these adults and children. The knowledge of FASD is not great in the general community and it's actually not that great in medical circles."

There are now three specialist FASD clinics in Australia - Gold Coast, Perth and western Sydney. As Kelly learned, it can take years before a child is correctly identified as having FASD because GPs and other child services often miss or misdiagnose the symptoms.

After a roundabout process involving a number of referrals, Joshua was eventually diagnosed with FASD last year by Professor Elizabeth Elliott, a consultant paediatrician at the Children's Hospital Westmead. Professor Elliott heads up a new FASD clinic there, which received $2.3 million from the state government earlier this year. Elliott has visited Newcastle to address a CDAT conference and to speak with the Newcastle FASD working party.

"FASD is a problem for all of society and cuts across socio-economic groups," she says. "It's a problem for education, health and juvenile justice. It's often perceived as being restricted to certain groups, but actually it's much more widespread than that.

"It's only in the last 15 years that it's been really articulated that this is a spectrum of disorders that may or may not have physical anomalies. Characteristically, FASD will be detected when a child goes to school or preschool and they're disruptive, they haven't got good focus, they're not learning.

"Many of these kids will have a normal IQ but major functional problems, however some will have a very low IQ and will be classified as intellectually impaired."

Says community paediatrician and staff specialist for Hunter New England Local Health District Dr Murray Webber: "The problem we have in health is that we have categories and labels for different kind of behaviours, but they're descriptive, not etiological. They tell us what we see, they don't tell us what causes it.

"I'm sure there are many kids who have been diagnosed with autism or ADHD [Attention Deficit Hyperactivity Disorder] who may have been exposed to alcohol in utero."

More well-known disorders such as Autistic Spectrum Disorder, dyslexia, and ADHD are often symptoms of FASD, which is the overlying cause.

There are three key myths about FASD - that it largely affects the Indigenous community, it is confined to those from a low socio-economic background, and only those children whose mothers consume large quantities of alcohol during pregnancy are at risk.

Addressing the true impact of FASD in Australia is hampered by these myths as well as an entrenched culture of high alcohol consumption. Given that the Hunter Region has the second highest rate of risky drinking in NSW, it follows that FASD affects a significant number of adults and children.

Tony Brown became aware of the disorder when he was invited to Parliament House in Canberra in September 2012 for the launch of a national action plan to reduce the incidence of FASD in Australia. "Like most people, I didn't appreciate the significance of FASD, but the launch was a light-bulb moment," he says. "I was chairing the Newcastle Community Drug Action Team and realised that we needed to take notice because we have one of the highest rates of the misuse of alcohol in the state.

"FASD is entirely preventable so why aren't we as a nation doing more about it, and why isn't more being done in Newcastle? There has to be a whole-of-government and whole-of-community approach."

Brown organised a CDAT conference in September 2013 with the theme, Alcohol and other Drugs at the Crossroads, and Professor Elliott addressed the forum. The working party was formed and Brown volunteered to be the chair, though he is keen for agencies to take on the leadership. Progress is slow, but the group is focused on three key areas: awareness and prevention, diagnosis and treatment, and life-long support.

"If we said we had a cure for the most common form of non-genetic birth defect, we'd be inundated," observes Brown. "And in this case, it's not a multibillion-dollar drug or vaccination or treatment. The cure is really, really simple - abstain from alcohol - but the connotations of that are profound.

"There's the economic implications for a powerful industry, and it also challenges an individual's behaviour. There's this kind of difficult to pinpoint but ingrained reluctance from some quarters about focusing on FASD because it challenges people's behaviours and beliefs, and their entitlement to consume alcohol."

ALCOHOL is a teratogen, meaning that it can disturb the development of an embryo and foetus. There is copious research about the harm it causes. The Australian experts who spoke to Weekender emphasised that alcohol was more destructive to an unborn baby than any illicit drug. "The hysteria about ice [methamphetamine] is a distraction," says Dr Shelton. "Alcohol is far more toxic and causes greater damage."

Experts acknowledge that women have been misled by confusing guidelines about alcohol consumption before and during pregnancy. They also acknowledge that shame is a factor in women not being upfront about how much they drink. The other significant factor is that about 60 per cent of pregnancies are unplanned, so women often aren't aware they are pregnant for at least six weeks and by then the embryo has undergone critical development.

"If you want to be an expert on FASD, the answer is always 60," says Dr Shelton. "Sixty per cent of pregnancies are unplanned, 60 per cent of pregnancies have some exposure to alcohol, 60 per cent of people with FASD will encounter the justice system at some point, and 60 per cent of professionals worry that talking about FASD will stigmatise or cause guilt in the person they're talking to so there's a certain amount of reluctance among health professionals to open up this conversation with their women patients."

Until 2000, the guidelines published by the National Health and Medical Research Council suggested that pregnant women should drink no more than seven alcoholic drinks in a week. "This condoned alcohol and quite a bit of alcohol," observes Professor Elliott.

The guidelines were reissued in 2009 and state that women who are planning a pregnancy or are pregnant should avoid alcohol. The key message is that there is no safe level of consumption.

"Women don't want to harm their baby, but there is the view that the occasional drink isn't a drama," says Dr Shelton. "We're battling against people's personal relationship with alcohol. Whenever I give a talk [with health professionals], I notice a certain frisson of uncertainty goes around the group when people start thinking about their own alcohol consumption. I wonder if that gets in the way of increasing awareness with our patients?"

WHEN Joshua Smythe was diagnosed last year with FASD, Kelly was grief-stricken - and angry. "All I could think was that this could have been different," she says. "He might have still been in care but without the alcohol he could have had a normal brain. This is a life sentence, it's not something you can fix or grow out of.

"You can work with it and we're helping him achieve, but there are moments as a carer when you are frustrated. This shouldn't have happened. I've come to understand that birth parents don't go out of their way to damage their child, but it still upsets me."

FASD is not recognised by the National Disability Insurance Scheme, though moves are afoot to address this. There is a shocking lack of support for parents and carers.

So what can be done?

"The really crazy thing," says Dr Shelton, "is there's lots of child development services around Australia and usually they're government-run and staffed by psychologists and allied health. That's the perfect team to diagnose FASD and while they have the right fundamental skills, they just don't have the right training.

"The state and federal governments could increase their capacity for FASD diagnosis and support dramatically without spending that much money. They don't' have to employ a lot of new people, they just need to commit money to training."

Brown wants the "Newcastle community and local health bureaucracy to systematically and strategically address this primarily preventable issue". He also believes change can happen at little cost to taxpayers. "There has to be an increase in awareness in the Newcastle community, as well as among service providers, health and government agencies.

"There are pockets of enthusiasm at Hunter New England Health but it would be great if they took FASD on as an articulated priority. I'm trying to coordinate, but it's impossible as a volunteer with no resources."

As I conclude my conversation with Kelly Smythe, an obvious question needs to be addressed. "If Josh had been handed over to us as a baby and we were told that this is what he'd be like in seven or eight years - would we have taken him home?" She pauses. "I don't think we would change anything. Giving him back is not an option. He's our boy and for him to leave our family would be like a death."

*Name has been changed for legal reasons.