Children with spina bifida, hydrocephalus lack medical supplies

COVID-19 | SPINA BIFIDA | HYPOCEPHALUS

The families of children with spina bifida and hydrocephalus are experiencing extreme shortage of medical supplies and food. 

According to Spina Bifida and Hydrocephalus Association of Uganda (SHAU) the transport restrictions due to the COVID-19 lockdown has made matter worse.

SHAU is a network of parents' organizations of families with children afflicted with spina bifida and hydrocephalus.

SHAU provides a coordinated formal approach and network to families in terms of mutual support, including counseling and advice on how to care for the children.

The association has got over 1500 registered families in Central, Eastern, Northern, Western and South-Western regions of the country.

In the Central region alone, SHAU has got over 300 needy families of children with spina bifida and hydrocephalus which are struggling to survive under the COVID-19 lockdown.

The executive director of SHAU, Ruth Nalugya, says access to medical care and supplies is critical for the management of their condition to prevent infections and ensure their survival.

"These children often suffer medical lapses that require emergency access to medicare, sometimes to the specialized hospital, Cure, located in Mbale," she explained.

Effects of spina bifida and hydrocephalus to a child

Nalugya revealed that some of the children have already started registering complications because of feeding on posho which is most affordable.

"They have poor digestive system which can be worsened by them feeding on hard foods. Many of the children have already reported complications as posho is the most affordable," Nalugya said.

The children are aged between eight months to six years.

Spina bifida and hydrocephalus are caused by micronutrient deficiency such as deficiency of folic acid in the mother's body. The unborn baby acquires spina bifida in the first four weeks after conception.

Good nutrition is important for children with the condition. Nalugya is however concerned that most of the families have not benefited from the food distribution and other essential support by the government since the beginning of the lockdown.

Spina bifida persons according to Nalugya suffer from bowel and bladder incontinence and so, they need soap and clean water all the time.

"Families are now finding a hard time cleaning their children as soap and clean water are difficult to access.

This puts our children at risk of UTIs and other related infections, as a child needs to wash thoroughly well with soap," she said.

Nalugya requests that all interventions should target to reduce micronutrient deficiencies by following the food and drug Act as well as targeting to improve the quality of life of children with special needs.