Hydrocephalus. Myelomeningocele. Spina Bifida. These foreign-sounding terms form the locution of the populous at Cure Hospital in Mbale. CURE is a foreign-funded but Ugandan-run pediatric hospital specializing in neurosurgery and seizures. We were blessed to be able to work with this leader of children’s healthcare in Uganda.
Spina bifida comes in many forms, but the basic diagnosis is this: the spinal column fails to close, allowing the spinal cord and cerebral spinal fluid (CSF) to leak, sometimes outside the body. This leads to myelomeningocele, causing babies to be paralyzed from the effected area down. Either due to the imbalance of fluids or other abnormality, ventricles (holding spaces in the brain for fluid) may become blocked. As the fluid in the brain increases since it cannot drain, so does pressure; babies whose skull bones have not yet fused develop hydrocephalus – meaning ‘water head’ – their heads swell to extremely abnormal proportions.
At CURE, they work around the clock to correct these problems in children – sometimes with only one surgeon on site, they perform the same 3-4 surgical procedures constantly: shunts, ETV’s, and MMC reductions…
It was difficult to see children in such a state: many times, they would not become so ill or deformed if their parents brought them to Cure at the first sign of hydrocephalus. But lack of money, transportation, ability to leave work, and the belief that such children are cursed delay parental action. Many children like this are tossed in a river, left for the elements, or given away – they are believed cursed.
I did not take photos of the children at their worst – they were in pain, malnourished, deformed, and I did not want to make them a spectacle in their healing (or dying) process. But a couple children I spent more time with caught my eye and my heart, their mothers were present and happy with their children, and were happy to share their story with me.