FASD in the Nordic countries: A present concern for children’s health

09.09.2024 - On September 9, the world marks International FASD Awareness Day, highlighting a preventable yet widespread public health issue — fetal alcohol spectrum disorders (FASD). In the Nordic countries, FASD remains a significant concern, affecting thousands of children each year. While the statistics vary by country, the message is clear: prenatal alcohol exposure can lead to irreversible damage, and awareness must be raised to prevent new cases. As several Nordic experts and organizations emphasize, action is needed to ensure that children born with FASD receive proper care, diagnosis, and support.

Sweden: A hidden crisis of undiagnosed FASD

In Sweden, research has uncovered troubling insights into the long-term impact of prenatal alcohol exposure. Magnus Landgren, a pediatric neurologist, has studied the invisible symptoms of FASD. According to Landgren, the damage caused by alcohol exposure often manifests as a specific form of ADHD, where children display fearlessness and a lack of understanding of consequences. “They have cognitive impairments that require substantial support from both healthcare and schools,” says Landgren, emphasizing the need for early diagnosis.

However, diagnosing FASD in Sweden remains a challenge. Landgren notes that for children to receive appropriate care, they must first be correctly diagnosed. “If one in 100 children is born with FASD, which is likely an underestimate, pediatricians and psychologists must be equipped to handle this. It cannot be treated as an advanced topic when it’s so common.”

Studies from the Västra Götaland region also highlight the lifelong struggles faced by individuals with FASD. Valdemar Landgren, a researcher involved in a follow-up study of adoptive children with alcohol-related damage, points out that these individuals often continue to face psychiatric challenges well into adulthood. “More than half were already in contact with psychiatric services, dealing with issues like anxiety and other mental health disorders,” he says.

Norway: The importance of early intervention

In Norway, early diagnosis and intervention are seen as critical to improving outcomes for children with FASD. Gro Løhaugen, a neuropsychologist leading the Regional Competence Service for Congenital Alcohol Damage at Oslo University Hospital, stresses the need for earlier diagnosis. “The prognosis for children with FASD is much better the earlier the condition is diagnosed and the child’s environment is adapted,” she explains.

Løhaugen emphasizes the need for increased awareness among healthcare professionals to distinguish FASD from conditions like ADHD or intellectual disabilities. Misdiagnosis can prevent children from receiving the specialized care they need. “Being impulsive is part of the congenital condition,” Løhaugen notes, “It’s not something that can be eliminated. It’s more important to learn to live with it.”

Children with FASD benefit from structured environments, consistent routines, and adult-led activities, which help them regulate their behavior. However, many children are not diagnosed until school age, which delays essential interventions. Løhaugen believes that greater education for healthcare workers will improve early diagnosis rates, ultimately benefiting more children.

Finland: Raising awareness to prevent a preventable disorder

In Finland, Alko Oy has been a strong advocate for FASD awareness, collaborating with partners to protect children's health. As Marja Aho, Alko’s Head of Responsibility, explains, “We share a common concern for children's health with our partners and want to raise awareness about the harms of alcohol use during pregnancy. FASD is solely caused by alcohol use during pregnancy, so it can be prevented through personal choices.” The facts are alarming — each year, Finland sees between 600 and 3,000 children born with some form of alcohol-related damage, and as many as 4% of all newborns may have FASD. It is one of the most common developmental disabilities, outpacing conditions like autism, cerebral palsy, and Down syndrome.

Despite ongoing campaigns, misconceptions persist about the safety of alcohol during pregnancy. Aho stresses that “alcohol is harmful in all stages of pregnancy, and even small amounts can cause harm.” Alko’s collaboration with organizations such as the Finnish Association on Intellectual and Developmental Disabilities underscores the importance of active communication. “There is a need for active messaging because alcohol remains the most significant factor affecting fetal development, and it is something pregnant women can control,” says Anneli Puhakka from the association.

Denmark: Unequal care and lack of support

In Denmark, the disparity in care for children with FASD is a growing concern. Each year, about 300 children are born with alcohol-related damage, but the actual number of pregnant women consuming alcohol is likely higher. A report from Denmark’s Socialstyrelsen (National Board of Social Services) estimates that up to 3,500 pregnant women consume alcohol or drugs annually.

The lack of uniform support across regions has led to criticism. Socialstyrelsen’s guidelines are not always followed, which means children in some regions may not receive the care and diagnosis they need. Helle Rotbøll Randløv from Socialstyrelsen points out, “The risk is that these children are not properly diagnosed, which could lead to them being misdiagnosed and misunderstood, resulting in difficult lives.”

Anne Louise Bischoff, chair of the Danish Pediatric Society, adds that the problem lies in the inconsistent support offered across Denmark. “Children should be treated equally, regardless of where they live,” she says. While Denmark struggles to implement its guidelines, experts in neighboring Sweden highlight that their country has no clear requirements at all for diagnosing and following up with children who have alcohol-related damage.

The way forward: a united Nordic effort

The Nordic countries face a shared challenge in addressing FASD. Although efforts are underway in each nation, there is a clear need for greater consistency in diagnosis, treatment, and support across the region. The upcoming “Fokus FAS” conference in Malmö, Sweden, in November 2024 will serve as an important platform for experts to discuss the latest research and practices related to FASD. It will bring together medical professionals, psychologists, and researchers from across the Nordics to share knowledge and strategies for better prevention and care.

As we mark FASD Awareness Day, the message from experts across the region is clear: FASD is a preventable condition, and early intervention can significantly improve the quality of life for those affected. The Nordic countries must continue to raise awareness, improve healthcare professionals’ understanding of FASD, and ensure that every child receives the care and support they need.

Sources:

• Alko Oy press release, Finland

• FASportalen, Sweden

• IQ.se, Sweden

• Oslo University Hospital news article, Norway

• DR.dk article, Denmark