Social and financial barriers may contribute to a "hidden mortality" in Uganda for children with congenital anomalies.

Journal Article (Journal Article)

BACKGROUND: The true incidence of congenital anomalies in sub-Saharan Africa is unknown. Owing to complex challenges associated with congenital anomalies, many affected babies may never present to a health facility, resulting in an underestimation of disease burden. METHODS: Interviews were conducted with Ugandans between September 2018 and May 2019. Responses from community members versus families of children with congenital anomalies were compared. RESULTS: A total of 198 Ugandans were interviewed (91 family members, 80 community members). All participants (N = 198) believed that seeking surgical care would lead to poverty, 43% (n = 84) assumed fathers would abandon the child, and 26% (n = 45) thought a child with a congenital anomaly in their community had been left to die. Causes of anomalies were believed to be contraceptive methods (48%, n = 95), witchcraft (17%, n = 34), or drugs (10%, n = 19). Of family members, 25 (28%) were advised to allow the child to die. Families with affected children were more likely to have a lower income (P < .001), believe anomalies could be treated (P = .007), but thought that allowing the child to die was best for the family (32% vs 9%; P < .0001). Monthly household income <50,000 Uganda shillings ($13 United States dollars) was a significant predictor of the father leaving the family (P = .024), being advised to not pursue medical care (P = .046), and believing that God should decide the child's fate (P = .047). CONCLUSION: Families face significant financial and social pressures when deciding to seek surgical care for a child with a congenital anomaly. Many children with anomalies may die and never reach a health facility to be counted, thus contributing to a hidden mortality.

Full Text

Duke Authors

Cited Authors

  • Commander, SJ; Ellis, D; Williamson, H; Oyania, F; Ruhigwa, C; Situma, M; Fitzgerald, TN

Published Date

  • February 2021

Published In

Volume / Issue

  • 169 / 2

Start / End Page

  • 311 - 317

PubMed ID

  • 33097243

Electronic International Standard Serial Number (EISSN)

  • 1532-7361

Digital Object Identifier (DOI)

  • 10.1016/j.surg.2020.09.018


  • eng

Conference Location

  • United States