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Foetal Alcohol Syndrome, sometimes referred to as Foetal Alcohol Spectrum Disorder (FASD), is a term given to a wide range of mental and physical conditions that present in a child whose mother consumed alcohol whilst pregnant with them.
FASD is a wide description for the following diagnoses:
- (FAS) Foetal Alcohol Syndrome.
- (PFAS) Partial Foetal Alcohol Syndrome.
- (ARND) Alcohol Related Neuro-developmental Disorder.
- (ARBD) Alcohol Related Birth Defects.
FASD can often be a ‘hidden’ disability, as physical presentations are not common. Most non-genetic learning disabilities in the UK can be attributed to FASD, with more than 70% of children whose parents’ consumed alcohol during pregnancy ending up in care.
In the UK, according to NICE, at least 6% of children are born with FASD, though recent studies suggest that as much as 17% of children have symptoms of FASD, highlighting that the majority go undiagnosed. Studies suggest that up to 41% of women consume alcohol whilst pregnant, some intentionally and some unknowingly.
Children and adults with FASD may need support with different parts of their day-to-day lives, including academic support, social support, and support with personal tasks and development.
Diagnosing foetal alcohol syndrome
Babies cannot be diagnosed with FASD whilst in the womb, though growth of the baby can be an indicating factor for diagnosis when the baby is born. Similarly, there is no test which can be performed to determine whether a child has FASD, so a number of factors are taken into consideration when FASD is suspected.
For an official diagnosis of FASD, clinicians will look for the following four factors:
1. A history of prenatal alcohol consumption.
2. Evidence of anomalies in the central nervous system, which are either structural (e.g. reduced size of the brain) or functional (e.g. cognitive and motor issues).
3. Thin eye openings, a flat and smooth area between the nose and mouth, and a thin upper lip.
4. Stunted growth, which may be apparent before and/or after birth.
In addition, clinicians will look for the following facial symptoms when making a diagnosis of FASD:
- A smaller than average head size (microcephaly).
- A flat middle section of the face.
- An upturned nose.
Midwives and obstetricians may be the first to identify a risk factor for foetal alcohol spectrum disorder, though it may be identified at a later stage by a paediatrician, child psychiatrist or health visitor.
Many cases of FASD go undiagnosed when no physical indicators are displayed. Instead, the child may be diagnosed with a learning disability such as Autism or Attention Deficit Hyperactive Disorder (ADHD). If a diagnosis of FASD is given at a later stage, this does not mean that there is an absence of ADHD. Additionally, consumption of alcohol may not have been reported by the mother.
Signs and symptoms of foetal alcohol syndrome
Symptoms of FASD are usually permanent, but the impact of the symptoms can be reduced if recognised and treated early. Symptoms may be identified in the womb, by measuring the growth of the foetus, or low weight at birth; however, this is less commonly diagnosed during pregnancy.
Babies can typically be diagnosed after a few weeks or months after being born when their facial features begin to establish. New-borns may also have seizures.
Symptoms of FASD are wide-ranging, but commonly include the following:
- Attention disorders, such as decreased concentration, hyperactivity, impulsive behaviour and tantrums.
- Difficulty in retaining information.
- Learning difficulties and disabilities.
- Communication issues, such as slow speech.
- Difficulty in controlling emotions.
- Poor social skills.
- Poor coordination.
- Issues with hearing and vision.
- Smaller than average head size.
- Height and/or weight is smaller than average.
- Issues with sleeping.
- Problems with organs such as the heart and kidneys, and bone development.
Physical symptoms are consistent; however, other symptoms might present sporadically. If there is any concern that the child may have these symptoms, the parent or carer should speak to a healthcare professional. If the child is adopted or is being fostered, a social worker should be made aware, as they may be able to shed light on family history.
What causes foetal alcohol syndrome?
FASD is not a hereditary condition and can only be caused by the mother consuming alcohol, rather than through the consumption of alcohol by the father prior to conception. This does not exclude alcohol from damaging sperm, which may in turn affect the development of a foetus, though it does not link directly to FASD.
It was first identified by Kenneth Lyons Jones in 1973, who associated defects in the central nervous system and specific facial features with ‘heavy alcohol consumption’. However, many years have passed since FASD was first defined, and it is no longer attributed to heavy drinking, but exposure in general.
The consumption of alcohol causes the most extreme impact on foetal development compared to all abusive substances, passing through the umbilical cord and being absorbed by the placenta within just a few minutes. The amount of alcohol in the bloodstream of the foetus will mirror the level in the mother’s bloodstream, and remains inside the foetus for a significant period of time, irreversibly damaging the cells in the brain and body. Research has shown that even a small amount of any alcohol can have detrimental effects on foetal development.
This includes wines, beers, ciders and spirits. Of course, the more alcohol that is consumed, the higher the risk of severe birth defects; however, there is no confirmed ‘safe’ amount of alcohol that can be consumed whilst pregnant.
Alcohol consumed prior to pregnancy is not known definitively to have a detrimental effect on the development of the foetus, though research on this is largely limited, and there is little mention of the link between alcohol consumption and the rates of successful full-term pregnancies.
Foetal alcohol syndrome complications
As alcohol has a significant impact on brain cell development, children who have FASD may also develop Cerebral Palsy. The precise cause of Cerebral Palsy is unknown; however, in relation to FASD, the condition arises where alcohol consumption suppresses oxygen and blood supply to the brain in the womb. This causes defects in the areas of the brain that control movement and muscle function. Cerebral Palsy does not often present immediately after birth, as the brain is still developing after birth, and is a painful, life-long condition.
Issues with organ function and immunity
Other complications of FASD include liver damage. Children with FASD might have degenerative liver tissue, causing their liver to function at a reduced level. Additionally, children with FASD are more likely to have a weakened immune system, with higher rates of infection, though this is not considered to be a factor used in diagnosing the disorder.
Those with FASD may also be overweight later in life. Foetal alcohol spectrum disorder has been known to cause neurological problems such as seizures and epileptic episodes, which can be extremely difficult for children to manage, and have serious consequences themselves.
In some cases, FASD can cause facial abnormalities beyond the typical facial indicators used in diagnosis. This can include microdontia, cleft palate and issues relating to the tongue which can cause issues with breathing.
In regards to mortality, those with FASD have a shorter lifespan on average than the rest of the population. In 2016, a study concluded that those with FASD had a life expectancy between the ages of 31 and 37, with the average age of death being 34.
Foetal alcohol syndrome has a strong association with Attention Deficit Hyperactive Disorder (ADHD) and other behavioural disorders and disabilities. Research has shown that whilst many cases of FASD are misdiagnosed as ADHD, prenatal alcohol exposure is the leading cause of ADHD in children.
Individuals who have a diagnosis of either FASD or ADHD may use the same medications to aid shared symptoms such as hyperactivity, restlessness, impulsiveness and lack of focus. Whilst attempts can be made to manage these symptoms, they do not disappear with age, as they are a consequence of brain damage.
Later on in life, individuals with FASD are at a higher risk of the following:
- Poor school attendance and educational gaps.
- Alcohol/drug addictions.
- Becoming a parent at a young age.
- Sexual abuse.
- Low income/poverty.
These problems are not solely linked to the biological effects of living with FASD, but also the social factors such as any children with FASD being in care or being fostered by different families, as well as late diagnosis and poor support.
Treating foetal alcohol syndrome
It is important to note that foetal alcohol syndrome and its effects are irreversible. There is no cure and symptoms will span the duration of the child’s life. However, depending on the amount of alcohol consumed, the frequency of consumption, and how soon it is recognised, there are ways that symptoms can be helped and potentially reduced.
Early treatment in a child’s developmental years (0-36 months) can help with learning some key social and other skills that may otherwise be severely impaired.
Services should be offered by the health provider, and they may include:
- Particular medications to aid some symptoms, such as pain or hyperactivity. These may include stimulants, antidepressants and neuroleptics.
- Speech therapy.
- Physical therapy.
- Behavioural/Psychological therapy.
- Special Educational Needs services.
Treatment is not limited to being directed towards the individual. Family support is usually offered, including counselling and training to aid the child’s development. A consistent, secure and loving environment is key to raising a child with foetal alcohol syndrome. It is extremely important for parents and carers to be aware of some of the skills they could use to help reduce the impact of FASD on the child and prevent further complications from the disorder.
These may include:
- Routines and repetition.
- Using particular vocabulary.
- Helping the child to develop social skills.
Preventing foetal alcohol syndrome
The only way to prevent foetal alcohol syndrome with certainty is to avoid drinking alcohol whilst pregnant, and whilst having unprotected sex without the use of effective birth control. Pregnancies are often unplanned, and refraining from drinking alcohol is the simplest way to ensure that the mother does not unknowingly put the child’s life at risk.
The most extreme result of drinking throughout pregnancy is loss of the baby. Contrary to common myths that a mother can drink alcohol in the first few weeks, there is no safe time to consume alcohol in a pregnancy, as the foetus’ development can be damaged as early as the beginning of the first trimester.
If a woman is undergoing fertility treatment, it is advisable to follow the same advice as with natural methods of conception. If a woman chooses to drink whilst sexually active, without using birth control, it is advisable to refrain from consuming any alcohol between ovulation and the first day of the menstrual cycle. Additionally, a reliable pregnancy test can be taken to ensure that there is no risk.
Otherwise, obstetricians and health workers should enquire whether the foetus could have been exposed to alcohol, which will determine the plan of care throughout the pregnancy. Being open and honest with your healthcare provider could help to reduce symptoms of FASD once the baby is born, as it would lead to swift intervention.
What support is available?
There are many organisations and helplines available to support parents who are expecting children to be born with FASD, have already birthed, or are caring for/have adopted children with FASD.
For parents and carers of children who are living with foetal alcohol spectrum disorder, the FASD Network is an organisation that works with the families of children suffering from FASD, including birth families and legal families, to offer training. NOFAS, the National Organisation for Foetal Alcohol Syndrome, provides a training course, free of charge, to help those caring for children with FASD to support them better and cater to their needs. Additionally, the FASD Trust offers a free and confidential helpline for those who are looking for advice, by calling 01608811599.
FASD Awareness offers free support groups and events for parents and carers, and also for those who have FASD aged under 11, between 11 and 17 and 18+. They also provide training sessions for schools.
All children and adults who are diagnosed with FASD are entitled to support from local authorities, and could be entitled to disability benefits, including Universal Credit and Disability Living Allowance, Personal Independence Allowance and Employment Support Allowance. Additionally, there may be financial support available concerning housing, tax, transport and employment.
CPD Online offers a virtual course to learn about Foetal Alcohol Syndrome, which may be useful for anyone working with people suffering from the disorder, to understand further methods of support.