Activists from various organizations in the country have revealed that children who suffer from Spina bifida (a birth defect in that affects the spine) and hydrocephalus disease were among those who were greatly affected by the restrictions which were imposed by Government as a Covid-19 prevention measure.
Hydrocephalus is a situation where children experience a build-up of fluid in the cavities deep within the brain which may cause headaches, double vision, poor balance, urinary incontinence, personality changes, or mental impairment.
In a discussion to mark the annual World Spina bifida, Hydrocephalus day on Saturday at Hotel Africana, Kampala, Ruth Nalugya, the Executive Director of the Spina Bifida and Hydrocephalus Association of Uganda said that due to the restrictions on both private and public transport during the COVID-19 lockdown, such children suffered greatly.
“The lockdown affected us greatly as eight children suffering from spina bifida and hydrocephalus died around the country due to the effects of the lockdown. One child died here in Kampala died as the mother arrived at the medical facility after walking four kilometres due to absence of transport means,” Nalugya said.
Nalugya, who is also a mother to a hydrocephalus child, opined that as government was giving out free food to members of the community, it should have come out with a special arrangement for this special group of children who can’t easily feed on posho and beans which were the common type of relief.
“Because the children have 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.
Nalugya added that with specialized medical facilities that handle such cases being out of reach by foot, mothers took the affected children to nearby health facilities but couldn’t get much help, which 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 complications,” she explained.
According to Dr Michael Ogwal, from the Cure Children’s Hospital in Mbale, lack of enough specialized hospitals to handle these delicate conditions made the ill health of the children.
“Many parents with children that have spina bifida and hydrocephalus could not move from wherever they were to Mbale for specialized treatment due to the lockdown and this greatly affected the children,” Ogwal said.
Offering solutions to the birth defects, Sam Watasa from the Uganda Consumers’ Protection Association advised that mothers ought to take foods or medicines that are rich in folic acid before or as they plan to 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 at 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.
Nalugya further said that in case of any other emergency situations like the Coronavirus pandemic, there is need to ensure that people with specific conditions like spina bifida and hydrocephalus are thought of and planned for.
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.