Experts warn on spina bifida, hydrocephalus conditions

Experts from Spina bifida and hydrocephalus Association of Uganda (SHAU) have called on the government to invest more of effort in sensitising people about these conditions.

 Ms Ruth Nalujja, the coordinator of SHAU, an organisation working towards improving the quality of lives of persons with spina bifida and hydrocephalus in Uganda, said most of Ugandans, especially in western region, lack knowledge about the conditions and this keeps the conditions prevailing.

“From our research that we have carried out in three years,  we have realised that western region has the highest number of children with spina bifida, in particular the districts of Kasese and Fort Portal. This is because most of them have little knowledge about the condition,”  Ms Nalujja said on Thursday in Kampala during the mid-term evaluation of People United for Spina bifida and Hydrocephalus (PUSH), a project that was established in December 2020 to enable people with these conditions to advocate for and access their rights and influence stakeholders towards a more inclusive society.

Spina bifida is a congenital condition that affects a developing embryo when it is 21 days old. By the time a mother gets to know that she is pregnant, the spinal cord has already been affected and it is irreversible.

Hydrocephalus is an abnormal increase of water in the brain. This makes the ventricles in the brain enlarge to accommodate the excess fluid, causing an abnormally big head in young children.

According to the project report data collected from Bukedea, Manafwa, Tororo, Mbale, Mitooma, Bushenyi, Mbarara, Kasese, Kampala, Wakiso, Mityana and Luweero districts,  western is the leading region where the spina bifida condition is prevalent with 28 percent.

Other evaluated regions include eastern  with 17 percent and central region with 8 percent from the evaluation done on at least 1,000 parents, caregivers and health workers during the study.

However, in hydrocephalus condition, eastern region tops with 10 percent, followed by central with 8 percent and western with 5 percent.

Youth and children with both conditions are mostly in central region, carrying 17 percent, followed by eastern with 5 percent and western with 2 percent.

The report reveals that the cost of caring  for a child with spina bifida and hydrocephalus is high and is likely to cause financial “burden” to already struggling parents with low incomes.

Costs related to supplies, travelling to access physiotherapy services and reviews, were shared by most caregivers as a big challenge.

Additionally,  the needed medication (Oxybutynin) would be out of stock yet they cannot access it elsewhere. Most of them recommended economic empowerment for caregivers in order to boost their incomes, which will ultimately enable them to support their children’s well-being.

Nutrient deficiencies

Ms Nalujja, however, said in western regions, people tend to concentrate on one particular type of food (milk), yet spina bifida is caused by lack of folic acid and nutrient deficiencies in a woman’s body and this could be the cause of the problem.

  “Perhaps in those regions, access to foods that are rich in folic acid is lacking or the combination of these nutrients and the type of the food they are feeding on is not compatible,”  she added.

Ms Nalujja urged researchers and development partners to invest more in trying to establish why in this geographical area, the condition is very high compared to other regions.

“Our relationship with the Ministry of Gender, Labour and Social Development, and the Ministry of Health is progressing. They have appreciated our work. However, a lot needs to be done. Of course they are listening to us and are receiving our reports but we need to be action oriented, with more intention on how we programmes because the government now needs to do beyond disability grants. We need to invest more in awareness raising and prevention,”  she added.

She also called upon the ministries to enforce policies, for example on food fortification, where producers of vegetable oil and wheat flour add folic acid and vitamin in their products, so that they are able to minimise the causes of these conditions.

Good news

Ms Nalujja said the good news is that the condition is preventable if the cause is nutritional and not genetic.  She, therefore, advised all women of child-bearing age to do preconception care to prepare themselves for pregnancy.

“In Uganda, we don’t plan for conceiving but now if we are to prevent spina bifida, we have to prepare ourselves by taking folic acid at least a month before,”  she said.

 To a mother who has already given birth to a child with spina bifida, Ms Nalujja said she is at a higher risk of giving birth to a child with a similar condition, especially when the cause was micronutrient deficiency or was genetic.

She advised such mothers to visit hospitals immediately after giving birth so that  health workers put them on folic acid throughout their reproductive time.

Ms Nalujja said the biggest number of children with hydrocephalus acquired it due to infections after they were born.

“We realised that when parents give birth to these children, the care is really lacking. You find a mother just giving a child any food and exposing them to all these risks. This is the major cause of acquired hydrocephalus,” she said.

She added that adults also contract hydrocephalus through getting a brain tumor, an accident or the flow of the cerebral spinal fluid, which ends up causing a lot of pressure in the head when interrupted, hence causing hydrocephalus.

[email protected]