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

• Published in: Child's nervous system 2023-07, Vol.39 (7), p.1783-1790
• Main Authors: Koning, Marinus, Koning, Jan, Kancherla, Vijaya, O’Neill, Patricia, Dorsey, Amanda, Zewdie, Kibruyisfaw, Yesehak, Bethelehem, Ashagre, Yordanos, Woldermarium, Mersha, Biluts, Hagos
• Format: Article
• Language: English
• Subjects: Medicine; Medicine & Public Health; Neurosciences; Neurosurgery; Review
• ISSN: 0256-7040; 1433-0350
• DOI: 10.1007/s00381-023-05932-1

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.