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.

Ambrose plays with Chisa in his home
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.

Ambrose visits Miro and his mother in the mountains
International Federation for Spina Bifida and Hydrocephalus/Io Cooman

A second chance at life

Ambrose knows that community-based rehabilitation is important, and knows the names of all 585 children with these conditions whom he has helped to survive and flourish. Moussa, a boy of 10, lived in isolation for many years until he received treatment and care. Chisa, age 8, will go to school next year thanks to training in continence management. Justice, age 2, abandoned by her mother, has now received a second chance at being part of a family. She was recently fostered by a couple who know how to take care of a child with a disability.

WHO’s role

WHO has an important role to play in the prevention of spina bifida and hydrocephalus, but equally in the treatment and care of children affected by these conditions. In 2010, WHO released new guidelines on community-based rehabilitation. The guidelines help workers like Ambrose enhance the quality of life for people with disabilities and their families, including children with spina bifida or hydrocephalus.

WHO promotes community-based rehabilitation as an important way of improving access to rehabilitation services for people with disabilities, especially in low- and middle-income countries. This approach helps make optimum use of local resources. Over the past 30 years, community-based rehabilitation has evolved into a multisectoral strategy to address the broader needs of people with disabilities, ensuring their participation and inclusion in society and enhancing their quality of life.

WHO works closely with the International Federation for Spina Bifida and Hydrocephalus on prevention, care and treatment of people with spina bifida or hydrocephalus.