The unequivocal message that no amount of alcohol is safe for a foetus at any stage of pregnancy is a challenging one to deliver in our drink-fuelled culture.
Ireland is estimated to have the third-highest prevalence of foetal alcohol syndrome (FAS) in the world, behind Belarus and Italy. About 600 babies are believed to be born here each year with FAS, which is the most severe and visibly identifiable form of a group of alcohol-related birth defects known as foetal alcohol syndrome disorders (FASD).
For every baby born with FAS, there are likely to be another nine or 10 babies born annually for whom FASD is a hidden disability. Their neurodevelopmental issues, due to the toxic effect of alcohol crossing the placenta, will not become apparent until around ages five to 10 years.
Drinking alcohol during pregnancy is the single greatest preventable cause of neurodevelopmental disorders, says public health consultant Dr Mary O’Mahony, who is the national clinical lead on FASD prevention. But she believes the focus needs to be on the consumption of alcohol generally, with 2019 figures from the World Health Organisation putting Ireland at sixth highest in the world in that regard.
“The likelihood of you drinking during pregnancy is based on your drinking pattern before you got pregnant,” she says. In the case of the 40 per cent of pregnancies in Ireland which are unplanned, “you will be pregnant before you realise you are pregnant and your normal drinking pattern will have continued”.
It takes only 67 women to drink during pregnancy for one child to have FAS and just 13 women to drink during pregnancy for a child to be born with FASD, she says, citing research based on a systematic review and meta-analysis of studies, published in the Lancet in 2017. The greater the quantity consumed the higher the risk but parents-to-be are advised that only cutting out alcohol can eliminate that risk. For researchers in this field, the gold standard for studying causal relationships, randomised controlled trials, are not possible because clearly it would be unethical to administer alcohol to some pregnant women to quantify the risks better.
It’s almost 50 years since the term foetal alcohol syndrome first appeared in an article published in the Lancet in 1973. A group of US paediatricians and psychiatrists used it to define facial abnormalities and developmental delays they were observing could occur in babies born to alcoholic mothers. Since then, the more that is learned through neuroscience, the more compelling the case for avoiding exposing unborn babies to any alcohol. Canada and Australia have led the way in addressing the problem, due to high rates of alcohol use in their indigenous populations.
Before we knew any better, doctors in Ireland used to recommend Guinness to pregnant women as a source of iron. In more recent times, there was a perception that the real risk from alcohol was confined to the first trimester, when the structure of the brain is developing. “We now know that is actually wrong. Alcohol at all stages can affect the brain of the developing foetus,” says Dr Aisling Sheehan, head of the Health Service Executive’s alcohol programme. Yet, expectant parents will still hear mixed messaging, not only from family and friends but even from some health professionals.
A 14-point action plan for the prevention of FASD, due to be presented to the board of the HSE in mid-September, includes steps to raise awareness not only among the public but also through training of professionals. Meanwhile, Sheehan is keen to use International FASD Day on September 9th to flag not only the risk of the “hidden disability” but also other dangers that come with the consumption of alcohol in pregnancy, including miscarriage, stillbirth and preterm birth.
“Health professionals need to be better informed about alcohol generally and FASD specifically,” says Dr Hugh Gallagher, a GP who specialises in addiction medicine and is a member of the HSE’s FASD prevention expert advisory group. He would like to see GPs introduce screening for alcohol use among all patients and to routinely advise women that “if they are planning or hoping to become pregnant, they cease alcohol and remain alcohol-free subsequently [through the pregnancy]”.
This should not be seen as some sort of paternalistic or punitive approach to women, he stresses, because this information is very important and knowledge changes attitudes. “It is not about shaming, punishment and fear — it’s quite the contrary. It’s doing a disservice to women to be denying them this information, in terms of prevention especially.”
Where the problem of FASD already exists in the family, an awareness of why and the availability of appropriate timely interventions are needed. Although the expert advisory group’s remit is prevention, it is also seeking better recognition, early intervention and supports for the estimated 4.75 per cent of children who are affected. O’Mahony says they are looking at 19 areas where support could be introduced or increased. There is no neurodevelopmental disorder register in Ireland but Gallagher refers to a study in Manchester that suggested the prevalence of FASD is twice the rate of autism spectrum disorder.
At the extreme end, babies with FAS will be born smaller than expected, says O’Mahony. Facial features include small eyes, a thin upper lip and the lack of a vertical groove between the nose and lip. However, she continues, “a child born with FASD will be of expected birth weight and will look normal. For some of them it’s only when they get into the problem-solving years of national school — third and fourth class — that their deficits will start to manifest. Invisible deficits would be attention and memory deficits; difficulty with abstract concepts such as maths and time; poor problem-solving skills; and difficulties learning from the consequences of their actions.”
One of Tristan Casson-Rennie’s adopted children has FASD and it was his family’s experiences that prompted him to set up a support organisation, FASD Ireland, in September 2021. (It has no connection with a previous group operating under the same name.)
“I have endured several years of frustration not being able to get recognition for my son’s condition. After a lot of challenges I decided obviously I wasn’t the only parent going through this,” he says. However he notes his family has been “absolutely blessed” in having a really good Camhs unit locally, in Ennis, Co Clare.
As chief executive of FASD Ireland, he has been surprised at the level of interest it has attracted over the past year, not just by parents but also professionals such as teachers and social workers keen to learn more. The organisation would encourage any couple trying for a baby to both stop drinking alcohol, to support each other. Actor Russell Crowe, Prince Harry and Boris Johnson are among public figures who have declared they abstained from alcohol during a partner’s pregnancy.
One of the key issues for families dealing with FASD, says Casson-Rennie, is that it is not recognised as a disability in this country and the National Council for Special Education doesn’t see it as a condition that requires SNA support. “Families are struggling right now; they cannot get a diagnosis, they cannot get recognition and they cannot get help — from health, education and welfare.”
He talks about “the difficult conversation” that he believes health professionals are inclined to sidestep if FASD is seen as a possibility. A potential overlap between it and autism and ADHD is particularly sensitive.
In the broader context of alcohol use, Sheehan says, “we know from research that healthcare professionals find it more difficult to talk about alcohol than other topics such as smoking and physical activity. There is a wider issue in society that we need to tackle.”
She also acknowledges the stigma that potentially comes with a diagnosis of FASD — “There are not many other diseases that would have what caused it in the name. It can be really difficult for birth mothers.” Most of the people that they come across with a diagnosis are families who have fostered or adopted children.
“We know that the children are there — they are in our existing disability, mental health, paediatric services, just not necessarily with the diagnosis of FASD,” she adds.
As to those most at risk of having a baby with FASD, O’Mahony says these include women who have enough disposable income to keep alcohol in the house. “It is often the educated, professional women who continue to drink during pregnancy.” Students and those in lower socioeconomic groups are also vulnerable on the basis that they are more likely to binge drink.
She has proposed to the National Screening Advisory Committee that screening for alcohol in pregnancy be introduced to enable appropriate conversations, or the provision of supports and follow-ups, where necessary. It is already policy, under the maternity strategy, to have drug-alcohol liaison midwives in every maternity hospital but that has not yet been achieved everywhere outside Dublin.
A pregnant woman’s urine is checked at every GP or hospital visit, O’Mahony points out, so this could be used for screening.
“It’s about helping, not blaming,” she adds, reiterating that ultimately we have a societal problem. “As a country we really have a difficulty with alcohol and the best way we can reduce FASD in children is to bring our alcohol consumption right down.”
‘Everyone knows someone with FASD’
A mother of two children with foetal alcohol syndrome disorder (FASD), who wishes to remain anonymous, outlines the impact on their daily lives:
Our morning routine has to be like clockwork, to avoid any meltdowns. Trying to keep things as calm as possible has proven to be the best strategy. Many children with FASD have major problems with sleep; our eldest tries his best not to sleep if he can help it, which results in behavioural problems. He’s better now than he was, but it’s still a big struggle for him.
Over the summer we have been practising with them to put their cereal in their breakfast bowls by themselves. It does seem strange at their ages (preteens now) that they are only at this stage. Like all children with FASD, their adaptive functioning skills are way behind their chronological ages.
The impact of being exposed to alcohol in utero also means they have many physical conditions, including very poor muscle tone or hypermobility, which impacts on their ability to lift, pour, carry, all of the mundane tasks we take for granted. We scoured shops for just the right shape and size of container to put the cereal in so that it was easier for them to lift and pour. They haven’t yet mastered pouring in the milk — we haven’t yet found the right jug!
We ensure the two of them use the bathroom and eat their breakfast separately because being in the kitchen or bathroom together can be quite chaotic. Extreme sensory issues associated with FASD means that basic hygiene such as teeth brushing and washing hands is a huge deal, requiring a lot of instruction and reassurance. Getting dressed can be a struggle, especially if buttons or zips are involved, as the poor muscle tone in their fingers makes it very challenging.
Our children have no concept of time. Any kind of pressure to hurry up can result in a meltdown, as they seem to internalise it intensely. Throw mobility problems and lack of spatial awareness into the mix and preparing them to get out the door and into the car without an incident is a daily challenge.
To look at our children, the needs aren’t obvious. It’s hard when we get strange looks from other parents due to our two squabbling over a game or toy designed for much younger children. Social skills are an issue, coupled with poor emotional regulation.
Children with FASD don’t understand consequences, neither do they respond well to typical rewards, much to the dismay of the “Supernanny star chart” brigade. They don’t get anything abstract so don’t learn the same way as other children with hypothetical situations. Explaining “If you do this then this can happen, etc” is met with a dead-eyed glazed look.
Children with FASD also have many cognitive deficits, such as processing delays. This is especially true of instructions: they literally miss some of the words being said, and hence may do the opposite of what they’re being asked. This can look to the uninitiated as defiance. Teachers can’t believe that these overly sociable and verbally articulate (as many children with FASD are) children can have any serious cognitive deficits. The children are very adaptable in groups and will copy and mimic what their peers are doing, making it even more difficult to explain the challenges to teaching staff who receive minimal training in special education needs and zero training in FASD. This means every incident following sensory overload or a lack of understanding due to processing delays, is met with disciplinary action.
Even though we have professional reports stating our children’s needs, challenges and requirements, and professionals have spoken to the schools on our behalf, we are met with: “Well, we’ve never come across this type of disability before.” Considering how Ireland rates globally regarding alcohol consumption during pregnancy, we know that schools are coming across it, they just aren’t recognising how it presents in behaviour and learning challenges.
With heavy hearts, like many parents of children who require additional support, we’re starting to accept that ours may never be able to live independently. They are charming, funny, resilient and determined and have masses of potential but, due to a totally preventable condition which has damaged their brains irreversibly, we know the odds are stacked against them. With no pathway for assessment or diagnosis of FASD in Ireland we have been forced to seek and pay for services abroad. Meanwhile, with so much time being taken up with tending to the children’s care needs, trying to navigate the health and education systems to gain the required support, and research and implement strategies, both of our careers have had to be put on the back burner, impacting on earnings and causing further stress.
We try to stay as positive as possible and not get too overwhelmed with worries about the future but it is a major concern. What would greatly help is for all professionals involved with families, including GPs, nurses, healthcare staff, paediatricians, teachers, SNAs, childcare workers, social care workers, etc, to have FASD training and to listen to parents’ concerns. More importantly, all relevant government ministers and their departments should educate themselves on the issues involved.
Everyone in Ireland knows someone with FASD; you just don’t recognise it.