Government urged budget for children with spina bifida

By Anthony Kushaba


The Government has been urged to budget for children suffering from spina bifida and hydrocephalus diseases across the country.

The call was on Wednesday made by Aaron  Ndyowawe the pediatric Occupational Therapist and coordinator of Spina Bifida and Hydrocephalus Interdisciplinary program Western Uganda based at Ruharo Mission Hospital Mbarara while speaking at a stakeholder meeting held at Embassy Tours in Ntungamo town ahead of the annual World Spina Bifida and Hydrocephalus Day on 25th October under the theme “strengthening stakeholders’ collaboration for effective service delivery to persons living with SPINA BIFIDA and HYDROCEPHALUS”.

over 20,000 children are born with spina bifida and hydrocephalus complications annually in Uganda yet the government has put little or no resources for their treatment at health facilities available to the communities.

He noted that many parents with such children are poor and the drugs and medical equipment are very expensive. There are only five health facilities in Western Region.

Spina bifida is more common among females are affected more often than males some risk factors are folic acid  increases the risk of spina bifida and other neural tube defects while hydrocephalus is bleeding inside the brain – for example, if blood leaks over the surface of the brain (subarachnoid hemorrhage), brain tumors and head injury

Namara Molly the chairperson of Spina Bifida and Hydrocephalus Association of Uganda Western Region expressed concern that these children with Spina Bifida and Hydrocephalus complications are victimized and schools decline to admit them claiming they cannot take care of them and the ministry has done nothing to address it.

Atukundaire Smart the Ntungamo inspector of schools in charge of special needs acknowledged that the district has over 136 children with Spina Bifida and Hydrocephalus but they are not in schools because parents and community saw them as a curse to the families.

 The district councilor representing PWDs Patrick Rwakabare warned the government against waiting for the NGOs and donors to come for the rescue of PWDs yet they are also eligible Ugandans but tend to forget them on providing basic needs such as wheelchairs, scratches, and health facilities.

Twesigye Nesterio who represented DHO and CAO pledged total support towards the PWDs including children born Spina Bifida and Hydrocephalus because everyone at any time is a candidate for such complication.

Gumisiriza Francis Ruhinja who represented DEO said that parents need to know that even those children who are being hidden in Kraals and stores once given an opportunity can become persons of great importance in the community.

The district speaker Twikiriize Nicholas Mugyeni expressed district commitment to allocate funding in this coming financial year; there shall be a portion of local revenue towards PWDs.

Nicholas Twikirize at the meeting

Twikirize revealed that since all people are candidates of disability, it is very important to embrace collective responsibility towards supporting the cause.