A case study of ReachAnother Foundation as a change champion for developing spina bifida neurosurgical care and advocating for primary prevention in Ethiopia

• Type of Material: Article
• Authors: Marinus Koning, ReachAnother Foundation; Jan Koning, ReachAnother Foundation Nederland; Vijaya Kancherla, Emory University; Patricia O Neill, ReachAnother Foundation; Amanda Dorsey, Emory University; Kibruyisfaw Zewdie, Addis Ababa University; Bethelehem Yesehak, Addis Ababa University; Yordanos Ashagre, Addis Ababa University; Mersha Woldermarium, Addis Ababa University; Hagos Biluts, Addis Ababa University
• Language: English
• Date: 2023-07-01
• Publisher: Springer Nature
• Publication Version: Final Published Version
• Copyright Statement: © The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature 2023, Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.
• Final Published Version (URL): http://dx.doi.org/10.1007/s00381-023-05932-1
• Title of Journal or Parent Work: Child's Nervous System
• Volume: 39
• Issue: 7
• Start Page: 1783
• End Page: 1790
• Keywords: Prevalence; Spina bifida; Folic Acid; Infant, Newborn; Spinal Dysraphism; Ethiopia; Primary Prevention; Closure surgery; Food, Fortified; Humans; Hydrocephalus
• Research Categories: Health Sciences, Public Health; Health Sciences, Epidemiology

Abstract

Spina bifida is a serious birth defect affecting the central nervous system, characterized by incomplete closure of the neural tube. Ethiopia has a very high prevalence of spina bifida, affecting about 40 cases per 10,000 births. Babies born with spina bifida require early closure surgery, done within the first 2–3 days after birth. Some babies need repeat surgeries to address complications, including hydrocephalus. Without medical care, babies have a high risk of death within the first 5 years of their life. Neurosurgical capacity for spina bifida closure surgery at birth is a relatively new development in Ethiopia. ReachAnother Foundation, a not-for-profit organization based in OR, USA, started work in Ethiopia in 2009 and has been instrumental in training neurosurgeons and improving treatment for spina bifida and hydrocephalus. Along with the development of neurosurgical care, the Foundation has invested in training multi-disciplinary teams to conduct patient aftercare and has launched a platform for improved patient outcomes research. As of year 2022, they support six spina bifida “Centers of Excellence” nationwide and are continuously advocating for primary prevention of spina bifida through mandatory fortification of staple foods in Ethiopia. This paper describes ReachAnother’s efforts in Ethiopia in a short interval of time, benefiting numerous patients and families with spina bifida and anencephaly. We document this as a case study for other countries to model where resources are limited and the prevalence of spina bifida and hydrocephalus is high, especially in Asia and Africa.