Community-based support for children with spina bifida and hydrocephalus in Uganda

Feature story
October 2012
Ambrose Ganshanga, a 29-year-old occupational therapist in western Uganda, works with children with spina bifida. Spina bifida is a congenital anomaly (commonly referred to as a birth defect) in which the spinal column does not develop normally during the first weeks of pregnancy. This causes permanent damage to the spinal cord and nervous system, and can result in paralysis of the lower limbs or problems with bowel and bladder function.

International Federation for Spina Bifida and Hydrocephalus/Io Cooman
About 80-90% of babies with spina bifida also develop hydrocephalus, a condition that causes fluid inside the head to build up, causing pressure to increase and the skull to expand to a larger than normal size. It can also cause convulsions, tunnel vision, mental disability or death.
The risk of neural tube defects such as spina bifida can be reduced by up to 70% if the mother takes adequate amounts of folic acid every day before becoming pregnant. Sources of folic acid include whole grains, fortified staple foods like wheat and maize flour, dried beans, leafy vegetables and fruits or supplements containing folic acid.
“Disability is not inability”
“Children with spina bifida or hydrocephalus were neglected and most of them died at an early age due to limited care” says Ambrose, recalling the situation three years ago when he started working in a community-based rehabilitation programme, Organized Useful Rehabilitation Services (OURS).
The OURS programme covers 10 districts in Uganda which are home to more than 8 million people. Ambrose’s motto is “disability is not inability” and he does his best to improve the survival and quality of life of people with spina bifida and/or hydrocephalus. The programme provides families with accurate information about both conditions. It also helps families access rehabilitation services, including surgery when necessary, and supports them in stimulating and realizing their child’s potential.
Community-based support saves lives
Community-based support following surgery for spina bifida or hydrocephalus is essential for children with these conditions. According to a recent study of 128 children in south-eastern Uganda, the mortality rate among children under five with spina bifida was 37%, a rate 2.5 times greater than that of the general population. But in districts with community-based rehabilitation programmes, mortality among children with spina bifida was much lower (16%), approaching that for their unaffected peers.