Spina bifida, also known as meningomyelocele, is a major birth defect mostly associated with folate deficiency in the mother early in pregnancy. The prevalence of spina bifida is disproportionately high in Ethiopia compared to the global average; about 10,500 liveborn are affected annually. Many affected infants do not receive timely repair surgery. There are a high number of stillbirths, and neonatal, infant, and under‐five deaths. Mandatory fortification of staple foods such as wheat and maize flour with folic acid, a B vitamin, is an effective primary prevention strategy for spina bifida. Survival in those with spina bifida increases if neurosurgical intervention is available soon after birth, along with continuous surgical and clinical aftercare throughout the lifespan. Currently, Ethiopia does not have mandatory food fortification for primary prevention or adequate neurosurgical capacity to meet the need to prevent adverse outcomes associated with spina bifida. We present in this paper two concurrent and complementary policy and practice solutions occurring in Ethiopia through global partnerships: (1) capacity‐building of neurosurgery care through training programs; and (2) promoting national mandatory folic acid fortification of staples for primary prevention of spina bifida. These two policy and practice interventions ensure all affected infants can receive timely pediatric neurosurgery and sustained surgical aftercare through required neurosurgeon availability, and ensure primary prevention of spina bifida. Primary prevention of spina bifida frees up significant neurosurgical capacity in resource‐poor settings that can then be directed to other critical neurosurgical needs thus lowering child mortality and morbidity.
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.
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