The Role of Healthcare Professionals for Foetal Alcohol Syndrome

Foetal Alcohol Spectrum Disorder (FASD) refers to the range of neurodevelopmental problems caused by pre-natal exposure to alcohol. Babies whose mothers drank alcohol during their pregnancy can be born with birth defects and developmental disabilities. The effects are diverse and they impact on the individual throughout the course of their life.

There is no amount of alcohol that is known to be safe to drink during pregnancy. When a pregnant woman drinks, the alcohol in her bloodstream passes freely through the placenta into the foetus’ blood. Because the foetus does not have a fully developed liver, it cannot filter out the toxins from the alcohol as the mother can. Instead, the alcohol circulates in the foetus’ blood system which can harm the brain cells and damage the nervous system of the developing baby throughout the entire nine months of pregnancy. Mothers who drink during pregnancy, place their babies at risk of foetal alcohol spectrum disorder.

Foetal alcohol syndrome (FAS) is on the severe end of foetal alcohol spectrum disorders (FASD). The severity of foetal alcohol syndrome symptoms varies and some children have far greater problems than others do. Symptoms of foetal alcohol syndrome may include any mix of issues with how the body develops, thinking and learning skills, behaviour, and functioning and coping in daily life. Researchers have found that 428 conditions can co-occur with FASD. They can affect almost every system in the body, including:

• The central nervous system (brain)
• Vision
• Hearing
• Cardiac
• Circulation
• Digestion
• Musculoskeletal
• Respiratory

Foetal alcohol syndrome and other FASDs can be prevented by not drinking any alcohol during pregnancy.

A FASD prevalence study has been published by researchers from the University of Salford. This study shows that at least 1.8–3.6% of the children assessed in the study met the criteria for an FASD diagnosis. Nationally, the Salford figures equate to some 1.2–2.4 million individuals in the UK who may have had FASD, and shows that FASD affects more people than autism. However, more accurate figures of those affected by foetal alcohol syndrome and other FASDs are more difficult to ascertain for this complex and often largely hidden disability that most often is either undiagnosed or misdiagnosed.

The Salford study joins the recent ground-breaking publication of the Department of Health and Social Care FASD Needs Assessment for England, the Public Health England report on alcohol harm in pregnancy and the National Institute for Health and Care Excellence (NICE) Quality Standard on FASD in highlighting that FASD is a prevalent, severe neurodevelopmental disorder, and that those who are affected deserve diagnosis, preferably early diagnosis, and to be offered appropriate management plans so that their needs can be considered at every level.

Importance of Early Detection

Even though not every alcohol-exposed pregnancy results in FASD, there is no proven safe amount of alcohol to consume in pregnancy and studies show even low level alcohol use still may affect the developing baby.

The impact of prenatal alcohol exposure can result in serious consequences. Although the severity of foetal alcohol syndrome symptoms varies, the symptoms may include any mix of issues with how the body develops. The symptoms include any of the following:

• Physical development issues include:
• Facial features that are typical of foetal alcohol syndrome may include small eyes, a very thin upper lip, a flat nose bridge, and a smooth skin surface between the nose and upper lip
• Slow physical growth before and after birth. Newborn babies may have low birth weight, small head and smaller than average brain size. They may not grow or gain weight as well as other children
• Delayed development, including taking longer to reach milestones, such as sitting, talking and walking
• Vision or hearing problems
• Changes in how the heart, kidneys and bones develop
• Poor coordination or balance
• Being jittery or hyperactive
• Learning and thinking issues may include:
• Intellectual disability and learning disorders, including trouble with memory, learning new things, focusing and thinking
• Not understanding the results of choices made
• Poor judgement skills, such as having difficulties thinking through issues, problem-solving, reasoning and making decisions that affect everyday life
• Short attention span that affects staying with a task and finishing
• Poor concept of time that impacts following schedules, knowing what time to leave in order to arrive on time, and understanding how long a task will take
• Trouble with organising and planning or working towards a goal, including trouble understanding and following directions
• Social and behavioural issues may include:
• Functioning in everyday life, coping and interacting with others
• Challenges in school with attendance, learning, behaviour and interacting with others
• Trouble getting along with others, including struggling with communication and social skills
• Trouble adapting to change or switching from one task to another
• Issues with behaviour and with controlling emotions and actions
• Problems managing life skills, such as telling time, self-care, managing money and staying safe
• Being easily influenced by others or taken advantage of
• Quickly changing moods

Children affected by other FASDs have many of the same problems as those affected by FAS, but usually to a lesser degree. Those diagnosed with FASDs including FAS may also be at increased risk of developing mental health conditions such as depression and anxiety.

Diagnosing FASD including FAS is complicated, and there is no specific test for the condition. Doctors can diagnose the condition early based on a baby’s symptoms, especially if they know that the mother drank during pregnancy. However, getting a reliable history of pre-natal alcohol use can also be difficult as people will often have to rely on memory, and women may feel frightened and stigmatised by reporting alcohol use during pregnancy. Diagnosis requires a medical evaluation and neurodevelopmental assessment performed by specialists from a range of disciplines. Identification of the condition is through the recognition of expected characteristics such as those detailed above, while ruling out the impact of other causes that may better explain the symptoms.

The need for early detection and accurate diagnosis is critical for improving a child’s outcomes and their quality of life, as their symptoms can become increasingly complicated for them if they are unsupported. Early diagnosis of FAS creates better opportunities to intervene earlier, and reduces the rate of secondary disabilities and issues such as exclusion from school. It also reduces the risk of the mother having any future alcohol-exposed pregnancies.

FASD and FAS are complex, multi-faceted health problems, and it is necessary to take a wide-ranging approach to prevention.

Healthcare professionals are required to give pregnant women information about the risks associated with drinking alcohol in pregnancy. This is normally done through both verbal and written information throughout the pregnancy, not just at the first appointment, and this advice should be in addition to the advice provided on other lifestyle choices such as drugs, smoking and nutrition. Healthcare professionals are also required to ask throughout pregnancy whether there has been any alcohol use and to record it in the maternal notes.

Guidance from the UK Chief Medical Officers regarding alcohol and pregnancy states, “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. Drinking in pregnancy can lead to long-term harm to the baby, with the more you drink the greater the risk”. Raising awareness of the risks associated with drinking in pregnancy within the wider public also helps to educate people so that the risks are known and acknowledged before a pregnancy.

Who is Involved in Detecting and Addressing FAS?

Obstetricians and Gynaecologists

Gynaecologists are specialists in the care of a woman’s reproductive organs and health. Obstetricians provide routine prenatal care to women who are pregnant. They also diagnose and treat complications during pregnancy, and may deliver the baby and monitor the mother after childbirth.

The obstetrician and/or gynaecologist play a pivotal role in the identification of alcohol-related problems in women who are planning a pregnancy, or who are pregnant. They are able to provide information, advice and guidance to women of childbearing age on the risks of alcohol consumption during pregnancy and to emphasise that there is no safe amount of alcohol to consume during pregnancy to avoid the risks of causing harm to the unborn baby such as the risk of them developing FAS.

Women are asked about their alcohol use, their medical history, and any social factors that may increase the likelihood of them consuming alcohol. This helps to identify women at risk for drinking during pregnancy through this routine screening. They can then be targeted with information and support such as addiction counselling, social workers, or mental health services. This does, however, rely upon a woman’s honesty in answering these questions. It is a well-known fact that denial is a factor in many cases of alcohol abuse.

Once identified, the obstetrician and/or gynaecologist will be able to monitor a woman’s alcohol use and other risk factors during regular prenatal appointments, and may in some circumstances classify the pregnancy as high risk. This would mean that the pregnancy will require closer monitoring to check on the baby’s development and growth, which is usually achieved through regular ultrasounds. These can detect potential growth restrictions or abnormalities that might indicate prenatal alcohol exposure. Certain features detected by ultrasound such as a small head circumference, or congenital heart defects, may indicate FAS prior to birth; however, in most cases FAS is primarily identified after the baby is born.

Following the birth, the obstetrician and/or gynaecologist will continue to support the mother, addressing any mental health concerns and substance abuse issues. They might also coordinate care for any future pregnancies and advise on birth control methods to prevent unplanned pregnancies if the woman is at risk of continued alcohol use.

Paediatricians and Neonatologists

Paediatricians manage medical conditions affecting infants, children and young people, and neonatologists specialise in caring for and treating premature babies or infants born with congenital disorders, diseases or other health conditions. If alerted by the obstetrician and/or gynaecologist of a risk of FAS, the paediatrician and neonatologist will review the mother’s prenatal history, including any alcohol use, which is critical for making a diagnosis.

If alcohol consumption by the mother during pregnancy is known about or is suspected, after the birth, the obstetrician or gynaecologist will work with paediatricians and neonatologists to assess the newborn baby for any physical signs of FAS such as those described earlier in the article, in particular facial abnormalities and/or any neurological issues, for example poor coordination.

If FAS or FASD is suspected after birth the paediatricians and neonatologists can refer the baby to other specialists such as developmental specialists and genetic counsellors for a comprehensive diagnosis and early intervention.

Immediate health problems in babies suspected of FAS may include poor sucking reflex or failure to feed. They may show signs of irritability, tremors, or excessive crying due to the effects of alcohol exposure, and some babies may have congenital heart defects or breathing problems. Paediatricians and neonatologists will put in place strategies to help to manage these immediate health issues whilst continuing to monitor the baby’s physical growth and developmental milestones into infancy, such as motor skills, cognitive abilities and language development. As the baby develops into childhood, their neurodevelopmental progress is regularly assessed and if delays or abnormalities are detected, the child will be referred for more comprehensive evaluations, such as cognitive and behavioural testing.

Paediatricians and neonatologists will often work with multidisciplinary teams, including neuropsychologists, developmental specialists, and geneticists, to confirm the diagnosis of FAS or other FASDs, and to rule out other neurodevelopmental disorders or genetic syndromes.

Following a diagnosis, the multidisciplinary team is able to put interventions into place that are able to help manage symptoms and support the child’s physical, learning and communication difficulties. The earlier that a diagnosis is made, the earlier that interventions can be put into place and the more effective they may be.

General Practitioners (GPs)

As we have stated, FAS is a lifelong condition, so a baby or child diagnosed with the condition will require ongoing medical support and treatment. The GP often together with the paediatrician is able to monitor the situation with regular check-ups throughout childhood and will refer the child to specialists if and when any physical or mental health conditions occur such as vision or hearing problems, or to deal with anxiety, ADHD, or mood disorders, and to help support the child with speech and occupational therapies.

Psychiatrists and Psychologists

As a child develops, many of the cognitive, emotional and behavioural symptoms of FAS will begin to become more evident. Psychiatrists and psychologists are able to utilise a range of tools and techniques to assess cognitive and behavioural functionality such as learning difficulties. Depending on the child’s age, different tests will be used such as IQ testing and neuropsychological testing to evaluate memory, attention, problem-solving, and executive functioning deficits commonly seen in FAS. Psychiatrists and psychologists are also able to make behavioural assessments to measure issues such as hyperactivity, impulsivity, aggression, and social difficulties.

Other mental health disorders that are frequently associated with FAS can be assessed. These might include:

• Attention Deficit Hyperactivity Disorder (ADHD)
• Mood disorders such as depression and anxiety
• Conduct and behavioural disorders
• Learning disabilities
• Communication disorders

It is important that these assessments also take into consideration ruling out other neurodevelopmental disorders, such as autism spectrum disorder (ASD), because although there may be similarities in some of the symptoms, the conditions are very different.

The psychiatrists’ and psychologists’ assessment results are collated with the assessments results gained by all the other medical specialists in order to form a definitive diagnosis for FAS. They are then able to recommend a range of therapies that will help to address and support the child through childhood and into their adult life. These therapies might include:

• Social skills training
• Cognitive Behavioural Therapy (CBT)
• Behavioural therapy

They may also at times prescribe medication to help control symptoms of mental health issues that arise from FAS; these might include medication such as antidepressants or antipsychotic medications.

Once a child reaches school age, psychiatrists and psychologists can work together with schools and teaching staff to create Individualised Learning Plans (ILPs) that accommodate the learning difficulties of children with FAS.

Midwives and Nurses

During pregnancy, midwives and nurses are often the healthcare professionals who have the most contact with a pregnant woman. Their role is crucial in educating their patients about the risks and harms that can be caused by alcohol consumption during pregnancy. They are also able to monitor the mother during the pregnancy at regular anti-natal appointments. Midwives and nurses are often the health professionals present at the birth of a baby and so are in a good position to identify any possible signs of FAS, particularly the facial features, poor muscle tone, low birth weight and whether the baby has feeding difficulties. They can then alert specialists so that early diagnosis and interventions can be made.

After the birth, midwives and nurses provide post-natal care and monitoring to both mother and baby. Should any abnormalities in the baby’s physical appearance or behaviours begin to emerge during this period these can be highlighted to healthcare specialists. Midwives and nurses are also able to help treat a baby who may be born with alcohol withdrawal symptoms born to a mother with alcohol misuse disorder.

In the wider community midwives and nurses play a very important role in raising awareness about the risks associated with alcohol use, particularly when planning for or during a pregnancy.

Tools and Methods for Detecting FAS

The main screening for prenatal alcohol exposure relies on the information given by pregnant women at their early anti-natal appointments and throughout their pregnancy. This involves healthcare professionals asking questions relevant to a patient’s current and previous pregnancies, including the patient’s alcohol use. As we have highlighted earlier in this article, this assessment is highly dependent on the honesty of the patient about their alcohol consumption. Some patients may minimise their consumption as they may feel embarrassed that they drink more than is recommended, or they may be in denial about an alcohol misuse problem.

Whatever the reason, it is important that healthcare professionals remain non-judgemental in their communication approach in order to get an accurate picture of their patient’s alcohol use. This is why clear information about the potential risks of alcohol consumption to the baby is given to the patient, and that they are not made to feel guilty for drinking, but are helped to stop, even if this is only for the term of the pregnancy.

Foetal alcohol syndrome disorders including FAS cannot be diagnosed before birth, although an assessment of the potential risks of a baby being exposed to it can be, which is why an accurate maternal history assessment is so important.

To have a diagnosis of FASD, there should be a history or a strong suspicion of alcohol exposure during pregnancy. Healthcare professionals are then able to apply for genetic tests to be completed to rule out other disorders or factors that may contribute to the symptoms the baby is exhibiting. Due to a multitude of factors such as genetics, how much, and how often a foetus was exposed to alcohol prenatally, there is no single pattern or neuropsychological presentation that is specific to all individuals with FASD, although initially at or soon after birth physical facial features and birth weight can be an early indicator. Over time the healthcare professionals monitor for issues with:

• Physical growth and development
• Thinking, learning and language development
• Health
• Social interaction and behaviour

The National Institute for Health and Care Excellence (NICE) foetal alcohol spectrum disorder guidelines are used by healthcare professionals to help diagnose the condition and its severity. Assessments are made by a multidisciplinary team to confirm or exclude a diagnosis of FASD, and these cover:

• Motor skills
• Neuroanatomy or neurophysiology
• Cognition
• Language
• Academic achievement
• Memory
• Attention
• Executive function, including impulse control and hyperactivity
• Affect regulation
• Adaptive behaviour, social skills or social communication

If one child in a family is diagnosed with foetal alcohol syndrome (FAS), it may be important to evaluate siblings for foetal alcohol syndrome disorders (FASDs) if the mother drank alcohol during these pregnancies, as symptoms may be present, but may be less severe in nature.

Challenges in Diagnosing FAS

Accurate diagnosis of FASDs including FAS relies heavily on the awareness and knowledge of the condition and its symptoms by healthcare professionals, particularly those involved in pre- and post-natal care. Being fully informed about a mother’s alcohol use enables healthcare professionals to carry out risk assessments and to be alerted to the possibility that a baby may have been harmed during pregnancy. However, if the risk has not been highlighted, healthcare professionals may either miss or not be looking out for the early signs, meaning that babies may go undiagnosed at this stage.

FASDs including FAS share many symptoms with other developmental disorders such as ADHD or autism, and people can have both FASD and ADHD at the same time, although they are distinct and different conditions. Both disorders (FAS and ADHD) are listed in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5) and shared features, signs and symptoms include:

• Drinking alcohol during pregnancy can be the cause
• The effects are typically lifelong
• The brain structure may be affected, the head and brain can be much smaller than expected
• Those affected may have sensitivity to light, touch, taste, smell or sound
• Effects can include hyperactivity, impulsive behaviour and short attention span
• Early intervention can help to manage the condition(s)

Autism Spectrum Disorders (ASD) belong to a wider group of neurobiological developmental disorders, along with ADHD, and studies have shown that these two conditions often coexist.

Treatment and Management Strategies

There is no cure or specific treatment for FASDs including FAS. Early intervention by healthcare professionals may help to lessen some of the challenges of FAS and may help prevent some secondary disabilities such as mental health problems or behavioural issues.

Successful management of FAS requires a multidisciplinary approach by healthcare professionals, therapists and education specialists. The earlier a diagnosis can be made, the earlier an FAS management plan can be developed and enacted, which will help to improve the outcomes and life quality of individuals with FAS. However, in many cases the condition may not be fully diagnosed until later, perhaps even in late childhood. This is why a multidisciplinary approach is so important to ensure that appropriate treatment and support systems are implemented as soon as a diagnosis is confirmed.

The unique features of the condition mean that these management plans will need to be tailored to the specific needs of the individual with the condition so that they receive the support needed to deal with their particular issues. Healthcare professionals from various fields can come together to ensure that individuals with FAS receive the appropriate help and support. These might include:

• Paediatricians and developmental specialists
• Psychologists and psychiatrists
• Educational psychologists
• Speech and language therapists
• Occupational therapists
• Behavioural therapists

An individual diagnosed with FAS will require help and support throughout their life, and importantly through periods of transition such as starting and leaving education, preparing for employment, and developing from childhood to adulthood and perhaps for independent living.

The multidisciplinary approach should also encompass provision for help and support for the families of those affected by FAS, as managing the condition can take its toll on their health and well-being too. Some services are able to provide families and carers with counselling and/or support groups, respite services to enable them to take a break from their care responsibilities, and guidance to understand and address the associated challenges of the condition.

Training and Education for Healthcare Professionals

FASDs including FAS are preventable conditions, and that prevention is heavily reliant on raising awareness of the risks of alcohol use during pregnancy. To be able to do this effectively, healthcare professionals need to have been fully trained in all aspects of supporting women through pregnancy, including fully communicating the risks of alcohol use during pregnancy and being able to discuss patients’ alcohol consumption and reduction in a non-judgemental and supportive way.

Developing communication skills such as active questioning and listening skills can create an environment that enables an expectant mother to be honest about any alcohol use and to recognise and acknowledge the risks that their alcohol consumption poses to the unborn baby. Healthcare professionals also need to have the knowledge of help and support services available for alcohol use reduction so that they can direct their patients to them if needed.

It is crucial that all healthcare professionals, as well as therapists and education professionals, are fully aware of and understand the features, signs and symptoms of FASDs including FAS in order to be able to recognise any suspected or undiagnosed cases that may need to be referred for evaluation, and to be able to provide the appropriate support to those diagnosed with the condition.

As with all physical and mental health conditions, research into FASDs including FAS helps to inform and improve understanding and practice, which is why it is important that all healthcare professionals participate in Continuing Professional Development (CPD) activities such as:

• Refresher training
• Listening to podcasts
• Participating in multidisciplinary meetings and events
• Attending conferences
• Sharing best practice
• Reading
• Self-directed learning

Training and education about FASDs and FAS should not be confined to multidisciplinary professionals, as families and others who care for individuals with the condition can also benefit from education and training on the condition and the challenges that the condition has for both the individuals and their carers. FASD Network UK is a social enterprise which works with local authorities to offer training and support to foster carers, adoptive parents and birth families who are raising children with FASD.

Conclusion

Reducing alcohol consumption during pregnancy and raising awareness of the risks of alcohol use in pregnancy to the unborn child are key to preventing this preventable condition that impacts a baby’s whole life. Organisations such as Drymester run campaigns such as “Helping parents-to-be Go Alcohol Free” designed to educate and support parents-to-be with quitting alcohol.

In cases where prevention has not been possible, we have highlighted in this article that early diagnosis and intervention by the multidisciplinary professionals is crucial to make certain that individuals displaying the features, signs and symptoms of FASDs including FAS have access to a diagnosis and the appropriate support and treatment to ensure that they achieve positive outcomes and have the best quality of life.