What do we mean when we talk about alcohol-related harm in pregnancy? Is it harm to the embryo, fetus, or unborn child? Harm to the state of the pregnancy? Harm to the woman? All of the above? Are they one and the same? Throughout the month of September, the SSA website will publish a range of articles, interviews, and research analyses that explore the topic of alcohol-related harm in pregnancy. In the following blog, Natalie Davies introduces arguably the most prominent form of alcohol-related harm in pregnancy – fetal alcohol spectrum disorder (FASD) – and gives a preview of what ideas and arguments are to come in The Pregnancy Edit.
It is no coincidence that we’re exploring the topic of alcohol-related harm in pregnancy in September. This is the month when organisations, advocates, and families affected are raising awareness of fetal alcohol spectrum disorders (FASD) – a group of lifelong physical, behavioural, and cognitive disabilities caused by prenatal exposure to alcohol. Although there are many potential forms of alcohol-related harm in and around pregnancy – including difficulty conceiving, miscarriage and premature birth – FASD is the issue that has generated the biggest call to action.
‘What do we know about the cause of FASD?’
When women drink during pregnancy, alcohol is passed to the embryo or fetus through the placenta (the fleshy structure that provides oxygen and nutrients). At this point, so early in the lifecourse, alcohol is a hostile substance. The medical term for it is a ‘teratogen’, which means that it can adversely affect the development of the embryo/fetus.
There is no hard and fast rule about how much alcohol causes FASD – but, according to the British Medical Association’s appraisal of the evidence base, it is largely dependent on the level and pattern of alcohol consumption.
Some stages of pregnancy may be more vulnerable than others. For example, there is evidence to suggest that heavy drinking in specific periods of fetal development may result in FASD, but heavy drinking throughout the pregnancy may result in fetal alcohol syndrome (FAS), a type of fetal alcohol spectrum disorder characterised by: poor growth; distinctive facial features; movement and balance problems; learning difficulties; issues with attention, concentration or hyperactivity; problems with the liver, kidneys, heart or other organs; and hearing and vision problems.
There are also many factors that may increase or decrease the chance of alcohol causing irreversible harm, and explain why two women could drink the same amounts in pregnancy, but only one may go on to have a child affected by FASD. These factors include the genetic makeup of the woman and the embryo/fetus, the nutritional health of the woman, and the level of stress she is exposed to.
‘What do we know about diagnosing FASD?’
The current best estimates on the prevalence of fetal alcohol spectrum disorders in the UK are based on a study in Bristol, which recruited pregnant women with expected delivery dates between 1991 and 1992. This indicated that at least 6% of children in the study were exposed to alcohol during pregnancy and had evidence of significant impairment to the central nervous system. However, the proportion of children that met criteria for FASD, based on comprehensive screening methods but not a formal diagnosis, could have been as high as 17%.
Whether the figure is closer to 6% or 17%, there remains a large gap between how many people are suspected of having FASD and how many are able to access an accurate diagnosis and support. This is partly because prenatal exposure to alcohol can produce a spectrum of effects, and in the absence of definitive markers of FASD (e.g. facial abnormalities) the symptoms may overlap with other behavioural and developmental disorders. This is also partly because alcohol consumption during pregnancy can be difficult for women to disclose, and also difficult for professionals to draw conclusions from, as there isn’t a universally safe or unsafe threshold for drinking; every woman, every pregnancy, every situation is different. The difficulty getting a diagnosis can be exacerbated for adoptive and foster families who may not have information about prenatal alcohol exposure one way or another, let alone evidence of the level of consumption.
Dr Raja Mukherjee, who runs the only specialist diagnostic clinic for FASD at Surrey and Boarders Partnership NHS Foundation Trust, says:
“[This] is a disorder that is seemingly hidden in plain sight that we need to pay attention to. Unless we start looking for it we will continue to miss it. If we fail to diagnose it then those affected individuals will continue to be affected by a lack of support and have subsequent impact on them and wider service.”
In 2019, the UK’s first guidelines on FASD were published by NHS Scotland, providing a steer to people in Scotland who are involved in the assessment and diagnosis of FASD. This includes child development specialists, clinical and educational psychologists, clinical geneticists, general practitioners (GPs) and members of the primary care team, health visitors, members of the judicial system, midwives, neonatologists, nurses (e.g. school, learning disability and others), obstetricians, occupational therapists, paediatricians, physicians, physiotherapists, psychiatrists, social workers and speech and language therapists. As of May 2021, Scotland has also had a neurodevelopmental pathway for assessing, diagnosing and planning treatment for children, which names FASD along with autism, ADHD and many other disabilities.
Following Scotland’s lead, in March 2020 the National Institute for Health and Care Excellence (NICE) launched a consultation on draft quality standards for assessing and diagnosing fetal alcohol spectrum disorder in children and young people. The final version of the guidelines is expected soon after a series of delays due to COVID-19, and anticipation will be high about one particular aspect of the text: the draft guidelines proposed mandatory screening of alcohol consumption at every antenatal appointment, and for the results of that screening to be transferred to the child’s health records after birth.
When so much about a child’s life chances can be determined before birth, there is a strong argument for ensuring that medical history pertinent to the start of the lifecourse follows the child. However, to do so in the way the draft guidelines stated would have a deleterious impact on women – denying them the right to give or withhold consent, and denying them the right to medical confidentiality. There is also a very practical concern that it would compromise the relationship between women and their midwives, who, according to the Royal College of Midwives, are there to provide “women-centred” care:
“Being a midwife is more than just delivering babies. A midwife is usually the first and main contact for the woman during her pregnancy, throughout labour and the early postnatal period. She is responsible for providing care and supporting women to make informed choices about their care.”
Women typically see their midwife more than any other healthcare professional during pregnancy. For women who continue to drink during pregnancy, midwives are well-placed to offer advice and to deliver brief interventions aimed at helping them to reduce their drinking or stop drinking altogether. This kind of sensitive conversation, which midwives are very skilled at, requires them to develop a relationship based on mutual trust and support with their patients. If women fear that there will be consequences based on what they say to their midwife, they may be less inclined to speak openly, which would not serve the goal of preventing alcohol-related harm, or any other kind of harm, during pregnancy.
‘What do we know about women’s alcohol consumption in pregnancy?’
A paper published in The Lancet estimated that alcohol is consumed in 41% of pregnancies in the UK, which puts the UK in the top five countries in the world for alcohol consumption during pregnancy, along with Russia (37%), Denmark (46%), Belarus (47%), and Ireland (60%). This suggests that a high proportion of pregnancies come with some risk of FASD, as opposed to no risk, but without further information about the levels and patterns of alcohol consumption, it cannot tell us much more.
Still, the figure of 41% is cause for concern if the goal is for pregnant women to avoid alcohol altogether, which it has been in UK drinking guidelines since 2016:
- The British Medical Association’s recommendation for women who are pregnant, or considering a pregnancy, is that “the safest option is not to consume any alcohol”.
- The Royal College of Obstetricians and Gynaecologists advises that “The safest approach is not to drink alcohol at all if you are pregnant, if you think you could become pregnant or if you are breastfeeding”.
- Guidelines from the Chief Medical Officer state that “If you are pregnant or planning a pregnancy, the safest approach is not to drink alcohol at all, to keep risks to your baby to a minimum”. However, “The risk of harm to the baby is likely to be low if a woman has drunk only small amounts of alcohol before she knew she was pregnant or during pregnancy”.
Prior to 2016, pregnancy guidelines were more aligned with those for the general population, advising a low-risk drinking approach where women kept their consumption to a minimum and avoided ‘binge’ drinking. However, increased concern about the severe problems that children can develop when exposed to alcohol before birth, combined with the lack of evidence about exactly how much alcohol is linked to increased risk, led officials to advise that the safest option for women who are pregnant or could get pregnant is not to drink at all. The inclusion of women who ‘could get pregnant’ was to try and prevent alcohol consumption in what is known as the ‘pre-recognition period’ – the days or (usually) weeks before a woman knows that she is pregnant.
Advice for women to totally abstain from alcohol if they are pregnant or could get pregnant has been welcomed by some, and criticised by others. While on one hand it makes clear that there is no ‘safe’ level of drinking in pregnancy, on the other hand it obscures women’s ability to make an informed choice by labelling any and all drinking as risky, thereby only serving to help them make the ‘right’ choice.
Interestingly, a global study published in The Lancet in 2018 found that, for the general population, “the safest level of drinking is none” – in other words, there is no safe threshold for drinking. Yet, it is only for pregnant women that guidelines have rejected the informed choice approach, and shifted to a precautionary ‘abstinence-only’ approach to alcohol consumption.
‘What do we know about the context for preventing alcohol-related harm in pregnancy?’
The British Medical Association acknowledges that there are many reasons why women drink during pregnancy, and advises healthcare professionals to have a deeper appreciation for the fact that “alcohol consumption during pregnancy does not occur in isolation [and…] must be viewed in the context of society’s relationship with alcohol”.
Some of the reasons pregnant women drink may include:
- having a drinking problem or being dependent on alcohol
- having an unplanned pregnancy, and drinking before pregnancy has been confirmed
- having a planned pregnancy (which can happen quickly, or can take many years), and drinking before pregnancy has been confirmed
- having unresolved trauma and mental health problems, and using alcohol to cope with the consequences or symptoms
- being subject to abuse and control, including through the use of alcohol and drugs
- consuming small amounts of alcohol in social situations to avoid questions about pregnancy before a woman is ready to talk about it
- planning to terminate the pregnancy, or being undecided about whether to proceed with the pregnancy
- knowing that the pregnancy is unviable
Of course, none of these reasons negate the harm that can be caused to an embryo/fetus from alcohol consumption during pregnancy, but the range of situations that women can be in gives pause to consider whether blanket approaches to reducing alcohol-related harm during pregnancy – such as ‘abstinence-only’ advice for women who are pregnant or could get pregnant – will work across the board.
Would advice to abstain from alcohol resonate in the same way with someone who is already pregnant versus someone who is trying to conceive for many years? Would advice to abstain from alcohol help the woman who has an unplanned pregnancy and drank in the weeks before she knew she was pregnant? Would advice to abstain from alcohol be as effective in contexts where partners and friends continue to drink?
In Canada, public health specialists studying how to prevent FASD have come to the conclusion that women need more than advice ‘not to drink’ while pregnant. The following, they say, all contribute to improving women’s health and reducing the risk of having a child with FASD: helping women plan their pregnancies; helping women obtain prenatal care; helping women improve their nutrition; helping women reduce stress in pregnancy; and helping women heal from root causes of addiction such as experience of violence.
‘Where do we go from here?’
The fact that fetal alcohol spectrum disorders are preventable, provided women don’t drink during pregnancy, can engender very binary thinking about alcohol-related harm during pregnancy: drink alcohol and risk immense harm; abstain from alcohol and have zero risk of harm.
The enormous challenge for researchers, policymakers and practitioners is to understand how women engage with the concept of risk, and how they use this to make decisions in the context of their lives. This is particularly important when we consider that women receive so many messages about what they should and shouldn’t do when they are pregnant or trying to conceive. Sometimes these are based on strong evidence or the best medical consensus, but other times they are based on tradition, superstition, and opinion. Navigating these messages, or discerning between them, can be overwhelming.
Alcohol-related harm in pregnancy is a ‘high stakes’ topic around which to consider these questions, with implications for substance use policy, reproductive healthcare, and women’s rights, as well as the ability to effectively prevent fetal alcohol spectrum disorders.
This article was published as part of The Pregnancy Edit for September 2021. If you are interested in writing a blog or participating in an interview about alcohol-related harm in pregnancy for the SSA website, please contact Natalie Davies at natalie@addiction-ssa.org.
The opinions expressed in this post reflect the views of the author(s) and do not necessarily represent the opinions or official positions of the SSA.
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