ReachAnother Foundation, 1900 NE 3Rd St, Bend, OR, 97701, USA.
ReachAnother Foundation Nederland, Delft, the Netherlands.
Childs Nerv Syst. 2023 Jul;39(7):1783-1790. doi: 10.1007/s00381-023-05932-1. Epub 2023 Mar 25.
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.
神经管缺陷是一种严重的出生缺陷,影响中枢神经系统,其特征是神经管闭合不完全。埃塞俄比亚神经管缺陷的发病率非常高,每 10000 例出生中就有大约 40 例。患有神经管缺陷的婴儿需要早期进行关闭手术,在出生后 2-3 天内完成。一些婴儿需要重复手术来解决并发症,包括脑积水。如果没有医疗护理,婴儿在生命的头 5 年有很高的死亡风险。出生时进行神经管缺陷关闭手术的神经外科能力在埃塞俄比亚是一个相对较新的发展。位于美国俄勒冈州的非营利组织 ReachAnother 基金会于 2009 年开始在埃塞俄比亚开展工作,在培训神经外科医生和改善神经管缺陷和脑积水的治疗方面发挥了重要作用。随着神经外科护理的发展,该基金会投资培训多学科团队进行患者随访,并推出了一个改善患者结果研究的平台。截至 2022 年,他们在全国范围内支持六个神经管缺陷“卓越中心”,并一直在倡导通过在埃塞俄比亚强制强化主食来预防神经管缺陷。本文描述了 ReachAnother 在短时间内在埃塞俄比亚的努力,使许多患有神经管缺陷和无脑畸形的患者和家庭受益。我们将其作为一个案例研究,供其他资源有限且神经管缺陷和脑积水发病率高的国家(尤其是亚洲和非洲国家)效仿。