Birth Defects

An infant with a birth defect presents many challenges both for the child and the family. Children with sensory abnormalities, such as hearing or sight loss, have been shown to experience the greatest difficulty in psychosocial adjustment, whereas children with cardiac malformations experience maladjustment to a lesser extent. There have not been many studies addressing either the type of psychological problems or the long-term effects experienced by children with birth defects. A study of over 3,000 children in Canada reported that most children with cystic fibrosis (an inherited gene mutation that causes problems with the lungs, pancreas, and other organs) have some type of major psychiatric diagnosis, with anxiety disorder being the most common. Long-term research is needed, however, to assess any lasting effects of a child's condition on his or her mental and emotional well-being.

One component of a child's psychosocial development is related to social pressure. Studies have found that individuals with spina bifida and Down syndrome do not perceive themselves as sick. Many of the social difficulties experienced by children with birth defects are not caused directly by the anomaly but by the expectations of what is normal and expected in their communities.

Studies of the families of children with birth defects have focused on psychological stresses experienced by mothers. Mothers of infants with very low birthweights (which is a factor closely related to birth defects) experience greater psychological stress than mothers of normal weight infants. Overall, studies have shown that families of children with birth defects may experience more distress, as measured by higher levels of mental health treatment, than families of children without birth defects. These families, however, are no more prone to divorce, social isolation, or alcohol problems than families without a child affected by a birth defect.

There are a growing number of web-based resources for information about birth defects. The March of Dimes and the Centers for Disease Control and Prevention provide information and links to other web sites for information about specific conditions. Additionally, there are state and national birth defect monitoring programs. The purpose of these projects is to conduct surveillance about birth defects to target information dissemination, track changes in prevalence, and identify trends. This information stimulates research about prevention and affects program development. Several states use information from their birth defects registries to refer infants and their families to appropriate services.