Responding to Challenges in Diagnosing Fetal Alcohol Spectrum Disorder

E Chloe Romanis, Emma Milne, Samantha Halliday, Emma Cave

21 September 2020

Pregnancy is a unique time in a person’s life. It can be a time of joy and happiness at the prospect of bringing a new life into the world, but it can also be a time of worry, concern, and anxiety about your own health and the health of the unborn child. Much attention is given to personal conduct during pregnancy, particularly if it is deemed to have an impact on the health of the fetus. Particular concern has been raised in recent years about alcohol consumption on the developing fetus, and consequently, steps have been taken to protect fetal health. However, as we explain, the focus of healthcare in pregnancy needs to be the pregnant person, rather than about monitoring and controlling her behaviour and lifestyle choices whilst pregnant for the good of the ‘baby’.

Fetal Alcohol Spectrum Disorders (FASD)

Fetal Alcohol Spectrum Disorders are a range of conditions that sometimes occur in children that were prenatally exposed to alcohol during pregnancy. Alcohol in the blood stream can pass to the fetus through the placenta. The fetus cannot process alcohol well and damage can result in miscarriage or lifelong physical and mental problems, including hyperactivity and learning difficulties (NHS 2020). FASD is thought to be the most common non-genetic cause of learning disability in the Western World (BMA 2007, p7).

The risk is higher the more alcohol is consumed, but many variables such as the stage of pregnancy when alcohol is consumed, genetics and environmental factors are impactful. It is unclear whether there is a safe level of alcohol consumption in pregnancy and the British Medical Association (BMA), in its 2007 guidance that was updated in 2016, has called for more research (BMA 2007, p 14). The NHS favours caution and clarity and recommends that women do not drink at all in pregnancy (NHS 2020) (and see BMA 2007, p 20).

Some children with FASD have distinctive facial features such as a thin upper lip and smooth philtrum, but FASD can be difficult to recognise. It can often go undiagnosed or misdiagnosed, resulting in a lack of or inappropriate support. The BMA recommends a coordinated approach to raise public awareness, specific prevention strategies when women are at high-risk and screening for maternal alcohol consumption and (BMA 2007, p 20).

Screening for Alcohol Consumption

There is no test that will reliably indicate past alcohol use, though some biomarkers (measurable indicators) can indicate exposure to alcohol. The biomarkers could only be used with the pregnant person’s informed consent but would indicate that the clinician doesn’t trust their verbal reports.

Consequently, much reliance is placed on asking about alcohol consumption during ante-natal appointments, but this is complicated by under-reporting from people who are uncomfortable admitting to alcohol consumption, and embarrassment from healthcare professionals in asking intrusive questions. The National Institute for Health and Care Excellence (NICE) does not currently recommend screening for alcohol use in pregnancy, but the BMA (2007, p 26) argue that better screening could raise awareness of the risks of alcohol consumption, identify at-risk pregnancies and help identify at-risk neonates. In 2020, NICE have taken steps to implement a new quality standard that incorporates a screening strategy for FASD.

The FASD Quality Standard

NICE issues quality standards setting out priority areas for improvement and standardisation in health and social care. Practitioners aim to comply with them, providers use them to monitor standards and regulators use them to define good quality care. Quality standards can be endorsed by the Department of Health and Social Care and by relevant supporting organisations such as royal colleges and charities.

NICE seeks to issue a new quality standard on Fetal Alcohol Spectrum Disorder (NICE, 2020). A consultation was opened in March 2020 and then paused due to the Covid-19 pandemic, and relaunched in August 2020.

Three of the five quality statements in the draft standard focus on assessing and diagnosing FASD in children and young people. Our group is supportive of these proposals. Two of the statements, statements 1 and 2, cover alcohol consumption in pregnancy. Arkell (2020) has pointed to various problems with these two statements. The next sections represent our cumulative rather than individual concerns.

‘Statement 1 Pregnant women are given advice not to drink alcohol during pregnancy at their first contact appointment.’

This is problematic because:

1. Although consuming a significant or excessive amount of alcohol in pregnancy can result in FASD, evidence showing a link between consuming (as opposed to abusing) alcohol in pregnancy and negative consequences for resulting children is limited (see Thom et al., 2020; Mamluk et al., 2017).

There are risks associated with perpetuating a myth that any alcohol consumption can have serious consequences. (a) This might cause significant and unnecessary worry, to the degree that it might impact on pregnant people’s psychological welfare, especially amongst those who consumed alcohol before they were aware they were pregnant, or before it was recommended to them that they abstain from alcohol. (b) There is evidence to suggest that pregnant people who feel able to make their own lifestyle choices and who are supported in doing so (for example by reducing alcohol rather than abstinence) experience better prenatal outcomes (See Sharma et al 2013). (c) Case law (Montgomery v Lanarkshire Health Board(2015)) and professional guidance (e.g. GMC Consent: patients and doctors making decisions together, 2008) emphasise the need to inform patients so that they can weigh risks and decide themselves. Adopting a more nuanced approach would be consistent with evidence-based practice and would recognise the pregnant person as an autonomous agent, rather than merely a maternal environment (Halliday 2016).

2. The quality statement falls back on popular tropes of the pregnant woman as mother, drawing on the notion that any ‘good’ mother would act in the best interests of the fetus. (See Milne 2020; Halliday, 2016).

The impact of this is to encourage and promote notions of mother-blame and mother-guilt – the notion that anything that is ‘wrong’ with the ‘baby’ (used when referring to a fetus) must be the sole responsibility of the pregnant woman. Such attitudes are known to have substantial impact on the wellbeing and mental health of women, who can feel pressured to act in certain ways and ‘to blame’ for any possible negative outcome (Lupton, 2011; Harper & Rail, 2012; van Mulken et al., 2016; Ruhl, 1999).

‘Statement 2 Pregnant women have information on their alcohol consumption recorded throughout their pregnancy.’

Statement 2 calls for mandatory screening and the recording of pregnant people’s alcohol consumption, no matter the extent of alcohol consumption, together with the transferral of this information into the health records of children. The aims are to facilitate timely diagnosis, and to ensure that relevant information follows the child after birth even if the child does not remain in the care of its birth parent(s).

We feel this is problematic because:

1. This policy might induce feelings of shame, blame and discomfort which could result in people disengaging from prenatal care. Those most likely to disengage from care are likely to be those who need more support during their pregnancy as they are already disadvantaged in society, through poverty for example. They may also disengage from other forms of social care and support for fear of the same treatment (Romanis 2017). Thus, if the intention of this policy is to reduce the impact of or minimise the incidence of FASD it is unlikely to be successful in achieving its objective.

A preferable approach would be initiate policies that would make vulnerable people feel supported in accessing care, that provide accurate information and support choice, as opposed to subjecting them to excessive monitoring (Cave 2004, Halliday 2016, Romanis 2017).

2. The recording of information in this way constructs the pregnant person and their lifestyle choices as hostile action and a direct threat to the fetus (Romanis et al 2020). This reinforces the narrative that it is individual lifestyle behaviours in pregnancy that are entirely responsible for poor prenatal outcomes rather than broader structural and social issues (Bowden 2019). This is likely to cause significant harms to pregnant people’s mental health if they are made to feel entirely responsible for poor outcomes.

3. It is not clear that informed consent for the transferral of information will be obtained. It is concerning that this was not covered in the draft quality standards as informed consent is of central importance in ensuring that patient’s information is not misused. Trust will be undermined if people discover that their health information has been used in ways that they did not anticipate or agree to. The Quality Standard considers this policy to be ante-natal care rather than screening, but, as seen above, the BMA (2007) would consider it a form of screening. Informed consent is a cornerstone of screening.

4. There is potential for this initiative to reignite attempts to hold women liable (criminally or civilly) for their actions while pregnant. While this is not the intent of the quality standards, it must be remembered that by recording such information and transferring it to the health records of a child born alive then a record of behaviour will be created, which may be drawn upon as ‘evidence’. Therefore, this policy has the potential for opening up the door to women facing legal consequences. Holding women legally liable for their actions and omissions while pregnant has significant implications for women’s rights, resulting in a sex-based discrimination for all women due to the ‘risk’ of becoming pregnant (Brazier 1999; see Milne 2020 for a summary of the debate about foetal protection and women's rights). There is a slippery slope risk whereby women might be asked to divulge (and held to account) for other risky activities.

The consultation closed on 18 September. The expected Quality Standard publication date is January 2021.