Fetal Alcohol Syndrome Awareness Day: Time to Think, Reflect, and Take Action

Fetal Alcohol Syndrome Awareness Day is celebrated annually on 9^th September across the world. It was observed for the first time in 1999. Hence, this year marks 20 years since the first Fetal Alcohol Syndrome Awareness Day. The celebrations officially begin at 9.09 AM – the 9^th minute of the 9^th hour of the 9^th day of the 9^th month of the year, which serves as a reminder that during the nine months of pregnancy a woman should abstain from alcohol. On this day, people across the world gather for events that aim to raise awareness about the dangers of alcohol consumption during pregnancy and the plight of the affected children and their families who struggle every day to cope with the consequences of fetal alcohol syndrome (FAS).

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History of Fetal Alcohol Syndrome Awareness Day

Fetal Alcohol Syndrome Awareness Day was founded by Bonnie Buxton and Brian Philcox of FASworld and Teresa Kellerman of Fasstar. The first Fetal Alcohol Syndrome Awareness Day was celebrated on 9^th September, 1999. This celebration attracted much interest from many countries across the world, including Australia, New Zealand, USA, Canada, Germany, Sweden, Italy, and South Africa. Since then, the celebrations have spread to numerous other countries and are gathering momentum with the passage of each year. This tremendous response from the global community highlights the fact that ensuring an alcohol-free pregnancy is the responsibility of the community as a whole and not just a women’s issue.

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Fetal Alcohol Syndrome and its Complications

Fetal alcohol syndrome (FAS) falls under the fetal alcohol spectrum disorders (FASD), which is the leading preventable cause of non-genetic developmental disability that persists lifelong. FASD is an umbrella term that includes FAS, alcohol-related neurodevelopmental disorder (ARND) and alcohol-related birth defects (ARBD). Importantly, FASDs are more common than autism spectrum disorders (ASDs).

Consuming alcohol during pregnancy has been likened to playing Russian roulette with a baby’s health, as it can lead to miscarriage, stillbirth, prematurity, and sudden infant death syndrome (SIDS).

Prenatal exposure to alcohol can result in birth defects, intellectual or learning disabilities, behavioral problems, and trouble learning life skills. The affected children suffer from lifelong physical, intellectual, and behavioral complications, which are briefly highlighted below:

• Physical Complications: These include subtle facial anomalies, organ damage such as heart, kidney and bone damage, vision and hearing problems, sleeping difficulties, and developmental delays
• Intellectual Complications: These disabilities include cognitive deficits, learning difficulties, and low IQ, as well as problems associated with memory, analytical skills, attention deficit, reasoning, and judgment. Besides these, there are language problems, characterized by poor speech and lack of communication skills
• Behavioral Complications: Behavioral problems include impulsivity, distractibility, and social and emotional deficits. These can manifest as problems at school, trouble with the law, addiction, homelessness, and early death

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Fetal Alcohol Syndrome: Facts & Figures

• 1 in 8 women drink alcohol during pregnancy
• No amount of alcohol is considered safe for the developing fetus
• Alcohol poses a risk to the developing fetus at every stage of pregnancy
• 40,000 babies are born with FAS every year
• A developing fetus is exposed to the same concentration of alcohol as the pregnant mother
• FAS is 100 percent preventable if the developing fetus is not exposed to alcohol
• Number of FAS patients is 3-5 times more than HIV/AIDS patients
• FAS cannot be cured and persists lifelong
• 1 in 20 school-age children in the US are likely to be suffering from FAS
• The lifetime cost of care of a single FAS patient is USD 2 million

Alcohol Consumption among Women in India

As per the “Gender, Alcohol and Culture: An International Study” (GENACIS), the prevalence alcohol consumption among Indian women in the general population is approximately 5.8 percent. In this regard, it should be remembered that alcohol consumption among Indian women is largely confined to high-risk groups, such as tea plantation workers, tribal populations, women from lower socioeconomic background, female sex workers, and to a limited extent, extremely rich women from high society. However, middle-class women largely shun alcohol. The prevalence of alcohol consumption among women belonging to the high-risk groups is approximately 28-48 percent.

FAS Awareness Day Celebrations in Canada and New Zealand – A Snapshot

• Canada: In Calgary, on the occasion of FAS Awareness Day, people will be wearing red shoes as a symbol of support for children and adolescents living with FAS. Red is the awareness color for FAS. In Manitoba, a Fetal Alcohol Syndrome Awareness Day Walk is being organized on 9^th September 2019. The awareness walk will start at The Pas Friendship Center and end at the Gordon Lathlin Memorial Center, in the town of The Pas in Manitoba.
• New Zealand: In Auckland, a campaign called Red Shoes Rock! was launched five years ago by an adult FAS sufferer by the name of R.J. Formanek. He launched this campaign so that by wearing red shoes, FAS activists could stand out from the crowd, get people talking about the condition, and make it visible to the world at large. In Wellington, the FASD-CAN Annual Workshop will be held at The Terrace on the occasion of FAS Awareness Day for the benefit of parents, professionals and caregivers. The Guest Speakers will include neuropsychologists, clinical psychologists, occupational therapists, researchers, FAS advocates, and representatives from the Ministry of Health, Government of New Zealand.

Ways to Generate Awareness about Fetal Alcohol Syndrome

There are many ways to create awareness about FAS, some of which are highlighted below:

• Public Lectures: Popular lectures by renowned FAS experts, tailored for the general audience are very effective ways of enlightening and encouraging women to avoid alcohol during pregnancy
• Panel Discussions: These help to shape public opinion. Participants may include policymakers, medical experts, health administrators, non-governmental organizations (NGOs), and representatives from civil society, including family members of children living with FAS
• Media Coverage: The media is the mirror of society. Hence, media coverage of local events taking place on FAS Awareness Day is very important for spreading the message among people in the society at large. Moreover, the media could also organize talk shows and interviews of celebrities on radio and TV to generate awareness about FAS among the masses
• Breakfast Meetings: Breakfast meetings, aptly termed ‘BreakFASt’, could be hosted to provide an ideal opportunity to share information and partner with other like-minded people. Interaction between parents, community leaders, and other stakeholders could help initiate local support groups for affected families and formulate local policies. A ‘Pregnant Pause’ could also be observed at 9.09 AM during the breakfast gathering
• Real Life Stories: Real life stories of children and their families living with FAS would help to develop a better understanding of the trials and tribulations faced by the affected families and encourage them not to lose hope. These stories also help to demonstrate the need for solutions
• ‘Walk-Along’: A sponsored walk-along could be organized, including special walkers such as FAS sufferers who will walk side-by-side with other members of the community. A walk-along is very similar to a walkathon, except that it is meant to remind people that children affected by FAS need someone to ‘walk along’ with them throughout their life, so that they can attain their full potential
• Rallies: These are effective ways to raise awareness by displaying informative banners, placards, and posters having key messages about the dangers of alcohol consumption during pregnancy
• Social Media: The social media can be judiciously exploited to spread awareness about FAS. Sharing messages, infographics, stories, and other news materials on social media platforms such as Facebook, Twitter, and Instagram, will be able to spread awareness far and wide within the shortest time possible. The hashtag for Fetal Alcohol Syndrome Awareness Day is #FAS Day. The celebrations, events, and activities can also be followed on Twitter using the following Twitter handles: @FASDAdvisoryAAA, @NOFASUK, @CanFASD, and @NOFASDAustralia
• Webinars & Podcasts: These are effective ways of reaching the new generation. Catchy titles such as ‘Alcohol and Pregnancy Don’t Mix!' , ‘Alcohol and Pregnancy – A Dangerous Combination!’ or ‘Let’s Toast to Alcohol-free Pregnancies!’ could be used to attract attention
• Advocacy & Policy: Advocacy efforts help to raise awareness, both at the national and international levels and give a voice to those living with FAS to encourage legislators and policymakers to create actionable policies in a time-bound manner
• Networking: Setting-up a global network that includes government representatives, NGOs, FAS activists, pharma companies, clinicians, and other stakeholders will help to raise awareness, as well as develop and implement solutions for the benefit of FAS patients
• Information Dissemination: FAS related pamphlets, handouts, and other information materials on the theme ‘Think Before You Drink’ could be distributed at public places, including hospitals, doctor’s clinics, prenatal testing labs, schools, and colleges, which will help in spreading the message
• Art Contests: Sit-and-draw competitions for children and adolescents on topics related to FAS are an effective way of generating awareness among the new generation. School and college students could also be encouraged to design posters to promote the ‘No Alcohol, No Risk’ message
• Donations & Fundraising: Generous donations and fundraising activities can go a long way towards providing better care and support for the unfortunate, economically weaker members of society to help them in coping with the condition. Donations can also support medical research and educational activities related to FAS

Conclusion

Abstaining from alcohol consumption during pregnancy is the only way for preventing FAS. Expectant mothers should make healthy choices before, during and after pregnancy, duly supported by their family, friends and well-wishers.

In fact, we should all be a part of the solution by raising awareness about FAS. If we work collectively, we can make a difference to the lives of innocent children, which have been shattered by no fault of their own.

Most importantly, women should keep in mind: “if you’re pregnant, don’t drink. If you drink, don’t get pregnant”.

References:

1. FASD Awareness Month/Day - National Organization on Fetal Alcohol Syndrome (NOFAS), Washington D.C., USA - (https://www.nofas.org/fasdmonth/)
2. International Fetal Alcohol Spectrum Disorders Awareness Day is September 9 - National Institute on Alcohol Abuse and Alcoholism (NIAAA), National Institutes of Health (NIH), Bethesda, MD, USA - (https://www.niaaa.nih.gov/news-events/international-fetal-alcohol-spectrum-disorders-awareness-day-september-9)
3. Fetal Alcohol Spectrum Disorders (FASDs) - Centers for Disease Control and Prevention (CDC), Altanta, GA, USA - (https://www.cdc.gov/ncbddd/fasd/index.html)
4. Nayak RB, Murthy P. Fetal Alcohol Spectrum Disorder. Indian Pediatr. 2008; 45(12): 977-83 - (http://www.indianpediatrics.net/dec2008/977.pdf)
5. International FASD Awareness Day - NOFASD Australia - (https://www.nofasd.org.au/community/international-fasd-awareness-day/)
6. FASD Awareness Day - ActionPoint, Auckland, New Zealand - (https://www.actionpoint.org.nz/fasd)

Source-Medindia