Alcohol can harm children even before they are born. Foetal Alcohol Spectrum Disorder (FASD) is a neurodevelopmental condition with lifelong cognitive, emotional and behavioural challenges. The UK has the fourth highest level of prenatal alcohol use in the world and public knowledge of the risks associated with drinking while pregnant remains low. In this blog, Joanna Buckard, Specialist Project Co-Ordinator at The National Organisation for FASD, shares more about FASD Awareness Month and explains why it is needed.
When is FASD Awareness Month?
FASD Awareness Month takes place every September.
When is International FASD Day?
9 September is International FASD Day and has been since 1999.
The ninth day of the ninth month signifies that abstaining from alcohol for the nine months of pregnancy can ensure the baby will not be born with FASD.
What is Foetal Alcohol Spectrum Disorder?
“FASD results when prenatal alcohol exposure affects the developing brain and body. FASD is a spectrum. Each person with FASD is affected differently. While more than 400 conditions can co-occur, FASD is at its core a lifelong neurodevelopmental condition. All people with FASD have many strengths. Early diagnosis and appropriate support are essential, especially for executive functioning” Preferred Language Guide, 2020.
FASD is not the only outcome of drinking alcohol in pregnancy, it increases the risk of miscarriage, premature birth, still birth as well as sudden infant death syndrome (SIDS).
Studies suggest the more than 40% of women in the UK drink alcohol in pregnancy which places us fourth highest in the world.
The reality is that most children, young people and adults with FASD currently remain undiagnosed. SIGN 156 quote the prevalence rate for FASD in the UK as 3.2%. However, there are some groups which would have a higher prevalence of FASD such as children who are looked after or adopted, people in receipt of mental health or drug and alcohol services and those in the criminal justice system. Diagnosis and appropriate support can improve long term outcomes for people with FASD.
Why is raising awareness about the dangers of drinking while pregnant so important?
Since 2016 the UK Chief Medical Officers have said: “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.”
They further explain: “Drinking in pregnancy can lead to long-term harm to the baby, with the more you drink the greater the risk.”
Despite the CMO Guideline being in place for over half a decade, the draft WHO global action plan created an uproar in the media. Part of one sentence was poorly worded saying there should be “prevention of drinking among pregnant women and women of childbearing age”.
Whilst it is obvious to see what is wrong with that sentence, to ignore the intent behind the messaging was to create a space for misinformation for pregnant women. What followed was an onslaught of rhetoric around how laughable it was for WHO to say this and that women need evidence-based information around risk.
The facts are straight forward – no alcohol in pregnancy equals no risk of the baby having FASD and abstention also reduces the risk of other poor pregnancy outcomes. The media chose not to explain that alcohol is teratogenic (poisonous) to a developing foetus, they did not include the CMO guidance nor any FASD experts in any of the stories, instead they were designed to create outrage. This is a dangerous game which could result in unintentional harm.
In the UK each 09/09 different events are held to raise awareness about FASD. Previously National FASD has held events such as the Pregnant Pause flash mobs in London stations but this year is like no other. This year we are making it a full month!
What are the latest developments on our understanding of FASD?
This year the long-awaited first NICE quality standard on FASD is expected. This is built on the Scottish guideline on FASD, SIGN 156 which was published in 2019.
One of the changes will be around terminology. Since the diagnosis was first made in 1973 there has been a focus on a set of specific facial features. However, research has shown that this occurs in less than 10% of people with FASD. The new diagnostic terms will be FASD with/without sentinel facial features.
According to the draft, the Nice Quality Standard will include the following statements:
- Pregnant women are given advice not to drink alcohol during pregnancy at their first contact appointment
- Pregnant women have information on their alcohol consumption recorded throughout their pregnancy
- Children and young people with physical, developmental or behavioural difficulties and probable prenatal alcohol exposure are referred for assessment
- Children and young people with confirmed prenatal alcohol exposure or all 3 facial features associated with prenatal alcohol exposure have a neurodevelopmental assessment if there are clinical concerns
- Children and young people with a diagnosis of foetal alcohol spectrum disorder (FASD) have a management plan to address their needs
The new quality standard will include measurable indicators that CCGs and NHS will be required to ‘have regard’ for.
The Department of Health and Social Care is releasing its first FASD Health Needs Assessment for England on 09/09 – International FASD Day.
Public Health England also recently have published a High Impact Area Document on reducing harm from alcohol use in pregnancy.
Now is the time for all alcohol groups to add to their agendas the harm from alcohol-exposed pregnancies. National FASD stands ready to assist.
Written by Joanna Buckard
The National Organisation for FASD is dedicated to supporting people affected by FASD, their families and communities. It promotes education for professionals and public awareness about the risks of alcohol consumption during pregnancy. Find out more by visiting their website.
This blog was published with the permission of the author. The views expressed are solely the author’s own and do not necessarily represent the views of the Alcohol Health Alliance or its members.