New Jersey Birth Defects Overview and Data: FAS/FASD
In 1985, the Birth Defects Registry began collecting FAS as a mandated condition for children 0 through 1 year of age. In 2009, the rules were changed to mandate the reporting of FAS for children 0 through 5 years of age. Children with FAS who were identified after the mandated age, could also be voluntarily registered until they reached their 22 birthdays.
The figure below shows the number of children registered by birth year. To date, the total number of children with FAS/FASD reported to the NJ Birth Defects Registry is 847. The average number of children for this period is 25.67 per year. Of the total, 376 children are eligible for case management because they are between the ages of 1996 and 2017.
There are various factors affecting the number of children who are registered. First, the earlier mandate, to only register children 0 through 1, restricted who was required to be registered to only those children who met the narrow definition of FAS meaning that they met the definitive diagnosis of FAS made by a geneticist, developmental, and/other specialized physician at or around the time of birth. As the age group expanded, children who have fetal alcohol exposure as well as definitive FAS are required to be registered. Even the expanded age continues to result in underreporting of FAS as many children are not diagnosed until much later after the developmental effects of FAS are present and evaluated.
The figure does show that the highest number of FAS cases reported was for children born in the 1990’s. This may be due to or because of educational activity/public awareness/medical education. Additionally, the addition of the diagnosis of autism and comorbidities associated with autism in 2009, may be resulting in older children being now registered with FAS.
It is important to note that lower numbers reported for birth cohorts from 2010 through 2017 are more likely the results of the children’s age and not having been evaluated yet, rather than a decrease in the incidence of FAS. These early cases more likely reflect those children who meet the more narrow definitive diagnosis which resulted in more pronounced facial dysmorphia rather than subtler symptoms of developmental delays.
As CDC studies have identified that the incidence of FAS is between 0.2 to 1.5 infants per 1,000 live births in certain areas of the United States, we would expect the New Jersey counts to be between 2 and 150 children per birth year.