Cultural inhibitions are hindering the treatment of children suffering from hydrocephalus in the Acholi Sub-region.
Hydrocephalus occurs when the body makes more cerebrospinal fluid than the brain absorbs, causing the child’s head to swell abnormally big.
Isaac Odongo, the Project Officer at Spina Bifida and Hydrocephalus Association of Uganda (SHAU) says the majority of children born with the condition in the region are considered as curses by their parents or community members. Odongo was speaking on Thursday during a media engagement with news reporters and editors from Acholi and Lango Subregions held in Gulu City.
He says most of the time, children with hydratehalus are isolated from the community, and in worse case scenarios they are intentionally drowned in rivers or streams as they undergo ritual acts to be cleansed.
Odongo says the practice is a huge burden for organizations that are funding specialized surgeries and rehabilitation services.
Similar concerns are being registered in communities where children are born with Spina Bifida, a birth defect that occurs when the spine and spinal cord don’t form properly and occurs in 1 out of 1,000 live births.
According to Odongo, the limited knowledge about both Spina bifida and Hydrocephalus conditions in the communities coupled with limited facilities to handle them has exerbarated the situation.
In Uganda, patients are usually referred to specialized hospitals in Mbale, Mbarara Cities, and Mulago National Referral Hospital for treatment.
Odongo says although there is no national database to consolidate the statics of Hydrocephalus, regional data indicates Lango Sub-region leads in cases of hydrocephalus followed by the Acholi Sub-region.
Statistics from CURE Children’s Hospital in Mbale which specializes in the treatment of neurological conditions show that there was an increment in the cases of the spina bifida and hydrocephalus condition between 2016 and 2021.
Figures show that a total of 1,244 children underwent surgeries for Spina Bifida at the facility between 2016 and 2021 while 5,638 children were operated on for hydrocephalus during the same period.
Tom Bernard Nakhosi, an occupational Therapist at Gulu Regional Referral Hospital says whereas the community perceives those with the condition negatively, the causes are linked with environmental factors, genetics, and nutrition.
He notes that children suffering from both spina bifida and hydrocephalus can make a good recovery once they are referred for medical attention at an early stage.
On average of 940 surgeries have been conducted for children with hydrocephalus annually in the last six years at CURE Children’s Hospital in Mbale City while an estimated 800 children are born with spina bifida conditions annually according to statistics provided by SHAU.