The Acholi Cultural Institution has joined forces with medical experts to fight the myths surrounding spina bifida and hydrocephalus. Many locals link the conditions to witchcraft and bad omens.
This widespread belief across communities has led to only a few parents and relatives seeking medical attention for children living with the conditions.
Hydrocephalus is a neurological disorder caused by an excessive accumulation of cerebrospinal fluid due to abnormal secretion, circulation, or absorption. It is considered the most common reversible cause of dementia, yet remains an underestimated cause of psychiatric disorders.
Spina bifida, on the other hand, is a neural tube defect (NTD) resulting from a fault in the development of the central nervous system within the first 25 days of pregnancy.
Globally, the incidence ranges between 0.17 and 6.39 per 1,000 live births. Some causes are environmental, while others are medical.
In Uganda, an estimated 800 children are born with the condition each year, according to health officials.
Ms Stella Kijange, the minister in-charge of culture at Ker Kwaro Acholi, said many still believe the condition is caused by witchcraft or a curse.
‘Even if science points otherwise, some still believe it is witchcraft,’ she said. Ms Kijange explained that research has shown spina bifida to be either medical or biological. ‘I urge parents to take their children to health facilities so that they can be attended to by professional healthcare workers,’ she said.
The culture minister also called on relatives of affected individuals to disregard unqualified opinions.
‘A health facility with professional medical staff will provide all the answers you need. So, do not believe what those without a medical background tell you. Your children need treatment, not opinions,’ she added.
A study conducted by the Spina Bifida and Hydrocephalus Association of Uganda (SHAU) across 10 administrative units in Acholi involving 300 children found that cultural beliefs linking the conditions to witchcraft were widespread in the region.
The 2024 study covered the districts of Pader, Omoro, Lamwo, Amuru, Nwoya, and Kitgum, among others. Ms Justine Kamakune, the assistant programmes officer at SHAU, said some families believe the conditions is a curse.
‘Some parents believe the condition is linked to a generational curse. They think their forefathers did something bad,’ Ms Kamakune said.
She added that women are often accused of bringing a curse into their marital homes.
According to Ms Kamakune, SHAU has embarked on community sensitisation to ensure that children with spina bifida and hydrocephalus are not stigmatised but supported to complete school.
‘With culture still deeply rooted, 70 percent of women with children suffering from these medical conditions have become single,’ Ms Kamakune said.
‘We want to tell our people that there is no link between spina bifida and hydrocephalus with curses or witchcraft. We want them to understand these are purely medical conditions,’ she said. Mr Julius Ocakacon, a father of a 12-year-old boy living with the condition, said the community continues to link the condition to witchcraft.
‘My son was born on January 8, 2008 in hospital. The midwives came out and told me that my wife had produced a cursed baby boy. But I rejected the notion because I don’t believe in witchcraft. Now Brian is in P7 and will sit for his PLE this year at St Jude Primary School,’ he said.
Mr Ocakacon called for community sensitisation to correct misconceptions.
Dr Daniel Okello, the Gulu City health officer, said: ‘Lets educate these children so that they can achieve their dreams. They can live a normal life like anyone else if they are empowered.”