Insights into The Prenatal and Postnatal Knowledge & Critical Observations of Parents with Children who Have Down Syndrome: A Single Center Study

Abstract

Introduction: Down syndrome (DS) is one of the many genetic syndromes commonly confronted by pediatricians. These people commonly share a few features which include a low level of muscle tone (hypotonia), learning disabilities, and abnormalities of the cranium and facial parts. Aims and Objectives: To assess the pre and postnatal knowledge, of parents with Down syndrome children. Place and Duration of study: This descriptive cross-sectional study was conducted in Shifa International Hospital (SIH), by Final year medical students, in association with the Cytogenetics Department. between December 2019 to September 2021 Material and Methods: All the chidren diagnosed with Down Syndrome at the SIH and their parents were invited to participate in our study. Convenience sampling was used depending solely on the number of parents who had accepted our invitation. A total sample size of 35 was included, of which 15 agreed to participate. A detailed questionnaire having both close ended and open questions in English and Urdu was filled out by those parents who consented. Data was entered and analysed using SPSS version 24.0. pvalue ?0.05 was taken as significant. Results: Our results showed that 11 of the 15 DS children i.e., 73.3% were male and 4 out of 15 i.e., 26.6% were females. None of these children had siblings with the same disorder. 13 of the 15 cases (86.6%) were diagnosed post- natally only 2 cases (13.3%) pre-natally. All the cases i.e., 100% were diagnosed by a pediatrician and none were diagnosed by an obstetrician. Surprisingly increasing age of either parent seemed to increase the incidence of DS offspring. 60.0% (9 of the 15) of parents did not know the condition could be diagnosed prenatally. While 10 of 15 (66.6%) of them were aware of its general complications. Answering open ended questions parents identified the lack of awareness, special educational institutes, and presence of communication gap between them and doctors as some of the factors that hindered the welfare of DS children. Conclusion: Only one parent knew about DS complications pre-natally and only a few were aware that a pre-natal diagnosis could be formed. Postnatal knowledge of parents was sketchy also, especially regarding the future complications faced by DS children, Parents critically observed insufficient public awareness, societal taboos, paucity of local DS data and prenatal medical DS training, and consequently lack of govermnnental support required by special needs DS children in our country.