Fetal alcohol spectrum disorders (FASDs) occur following alcohol exposure during a mother’s pregnancy. But what is life like for those with fetal alcohol syndrome and their caregivers?
The Irish Examiner reports that researchers in Ireland are now running a survey – the first of its kind within the country – to better understand the lived experiences of people with fetal alcohol syndrome or caregivers. Dr. Katy Tobin, alongside ENDpae and Alcohol Forum Ireland, looks to better understand FASDs. Through this survey, Dr. Tobin hopes that doctors will be more informed and better able to diagnose infants with this condition.
If you would like to learn more about the survey or see how you can participate, head here.
Fetal Alcohol Syndrome
As described above, fetal alcohol syndrome results from maternal alcohol consumption during pregnancy. This condition causes characteristic mental and physical birth defects, though these defects are highly variable in severity. However, regardless of severity, the defects are also not reversible. Symptoms and characteristics associated with fetal alcohol syndrome include:
- Pre- and postnatal growth delays
- Increased sensitivity to sounds
- Joint and limb deformities
- Vision or hearing problems
- Low height and weight
- Poor balance and coordination
- A small jaw and thin upper lip
- Short eyelid folds or drooping of the upper eyelids
- Flattened mid-facial regions
Outside of fetal alcohol syndrome, other FASDs include alcohol-related birth defects, alcohol-related neurodevelopmental disorder, and neurobehavioral disorder associated with prenatal alcohol exposure. You can learn about these conditions here.
Each year, an estimated 600 babies in Ireland are born with fetal alcohol syndrome. This is extremely prevalent compared to other countries; in fact, Ireland is third in the world for FASD diagnoses. However, researchers believe it can be complicated getting a diagnosis or receiving care after the fact – leading to a huge unmet need.
Within this particular research, Dr. Tobin hopes to determine what life is like for those impacted by this syndrome and/or their caregivers. For example, what costs are associated with this diagnosis and its care? How well are other systems, such as the educational system or professional world, set up to help those with FASDs? What systems are in place to help caregivers and family members?
Hopefully, this research will determine where problems exist and how solutions could potentially be implemented. In the meantime, advocates in Ireland are pressing for pregnancy warnings to be placed on alcoholic beverages to ensure that consumers are aware of potential health risks that may arise.