Activists say lockdown badly affected children with spina bifida , hydrocephalus

Activists have decried the Coronavirus lockdown that they said badly affected children with spina bifida and hydrocephalus diseases around the country noting that there is need for a change in the approach.

Following the outbreak of the Coronavirus pandemic, government imposed a lockdown where both public and private transport was stopped as well as imposing a 7pm to 6 am curfew all over the country.

Speaking during a national discussion to mark the world spina bifida, hydrocephalus day on Saturday at Hotel Africana, Ruth Nalugya, the Executive Director of the Spina Bifida and Hydrocephalus Association of Uganda said due to the restrictions on both private and public transport during the COVID-19 lockdown, children suffered greatly.

“The lockdown affected us greatly as eight children suffering from spina bifida and hydrocephalus died around the country due to effects of the lockdown. One child died here in Kampala died as the mother arrived at the medical facility after walking for four kilometres due to absence of transport means,” Nalugya said.

According to Nalugya, who is also has a child with hydrocephalus, whereas government gave out free food to members of the public during the lockdown, the same was not of great help to children with the condition since they could not easily eat the posho and beans.

"Because the children have a poor digestive system, the situation was worsened by feeding them on food like posho and porridge and many of them developed complications due to this situation,” she said.

She noted that because specialized medical facilities to handle the situation were in long distances, mothers with children that have hydrocephalus took them to nearby health facilities but didn’t get much help, a situation Nalugya said also worsened the condition.

“When they went to other hospitals, they were turned away and because of this, they started self-medication. Because these children didn’t get proper medication, they got problems.”

According to Dr Michael Ogwal, from the Cure Children’s Hospital in Mbale, lack of enough specialized hospitals to handle the condition made matters worse.

“Many parents with children that have spina bifida and hydrocephalus could not move from wherever they are, to Mbale for specialized treatment due to the lockdown and this greatly affected the children,”Ogwal said.

Way forward

According to Sam Watasa from the Uganda Consumers’ Protection Association, mothers ought to take foods or medicines that are rich in folic acid before conceiving.

“The problem is that mothers don’t prepare to conceive and know they have conceived when they miss their periods twice. However, the right thing would be that as soon as one conceives, they take folic acid to help avert the condition,”Watasa said.

Watasa emphasized the need to implement the Food and Nutrition Act that puts in place food committees and district and sub-county level to promote dietary habits among the public.

“There is need to look into the national ambulance service to dedicate some of them(ambulance units) for emergency support to health conditions that are more unique than the ordinary,”Watasa said.

He noted that if they this had been implemented, deaths of children with hydrocephalus would be averted during the lockdown.

Ruth Nalugya, the Executive Director of the Spina Bifida and Hydrocephalus Association of Uganda said that in case of any other emergency situations like the Coronavirus pandemic, there is need to ensure people with specific conditions like spina bifida and hydrocephalus ought to be thought of.

Dr.Pamela Nizeyimana, the senior education officer in charge of special needs in the Ministry of Education and Sports noted that government is working on the national inclusive education policy that will ensure that all children including those with spina bifida and hydrocephalus equally enjoy their right to education without segregation.