Fetal alcohol spectrum disorder: New Zealand birth mothers' experiences.

UNLABELLED: The aim of this study was to describe the 'lived' experiences of New Zealand birth mothers, from pregnancy onwards, of a child/ren diagnosed with Fetal Alcohol Spectrum Disorder (FASD).
METHOD: A qualitative paradigm was utilized so that the participants could tell their stories through words and text rather than collecting statistical data which is the domain of quantitative research. The adoption of a feminist standpoint theory bridged a communication gap, adjusted the balance of power within society and gave visibility and voice to the women. Eight New Zealand-resident multipara biological mothers ages 18 and over, who had nurtured or were still living with their affected offspring, were studied. Their ages ranged from 29 to 64. The mothers were interviewed in depth, face-to-face, using unstructured, open-ended questions. Data were analyzed using the constant comparative method.
RESULTS: The mothers described a range of issues of concern for their disabled offspring and themselves (as advocates) relating to health, social, educational, judicial systems, lack of knowledge by professionals and problems in diagnosis, to being oppressed and stigmatized. Cognitive concerns for the offspring included attention-deficit, absence of fear, diminished memory and comprehension and inability to acknowledge and understand consequences. Behavioural issues included excessive crying or no crying as a baby, lying, stealing, hyper-activity, aggressiveness, destructiveness, sexual promiscuity and few friends. Other issues of concern were delayed milestones and numerous health problems. All mothers stated that the pregnancy, labour and delivery of their child with FASD were different from their other non-compromised pregnancies/labours/deliveries. Most mothers said that the doctors used medical language which they did not understand, thus giving power to the former. Seven mothers were either married to or partners of alcoholics when they conceived their offspring with FASD. All mothers had been drinking alcohol before becoming pregnant. Six mothers came from drinking families. Most mothers continued to consume alcohol because they did not know that they had conceived. All mothers were unaware of FASD and its effects on the unborn child. Eight babies had low Apgar scores with an average of 6 (out of 10) and low birth weight (average 6lb 2oz). An Apgar score is a numerical expression of an infant's condition, usually determined at 60 seconds after birth, based on heart rate, respiratory efforts, muscle tone, reflex irritability and colour. All women were of middle to high socio-economic status. Seven mothers experienced family breakdown as a result of alcohol consumption by the biological father of the child with FASD. All women feared for their child's future.
CONCLUSION: Health, social, educational, judicial professionals, policy-makers and agencies, need to understand and be educated in the daily realities and complex problems that children with FASD and their families face. Only then will the correct diagnosis be made so that these individuals can receive the nurturing, needs, education, funding and support they require in order to live full and meaningful lives and have the quality of life they deserve.