Children with Spina Bifida Empowered with Life Skills as Officials Urged to Fully Implement Disability Programs

By Kabuye Ronald

Children living with Spina Bifida and Hydrocephalus have been encouraged to embrace their differences and develop life skills that enable them to live independently and with confidence.

This call was made by Ruth Nalugya, Executive Director of the Spina Bifida and Hydrocephalus Association of Uganda (SHAU), at the close of a five-day residential empowerment camp held at the House of Hope Centre in Lubaga, Kampala.

According to Nalugya, the initiative is part of a broader national program targeting at least 100 children annually across Uganda’s four regions: Central, Northern, Eastern, and Western. The House of Hope Centre alone also hosts over 240 families each year.

“These camps are designed to help children accept themselves, develop responsibility, build confidence, and learn how to engage with the world outside their homes,” Nalugya said. “Spina Bifida and Hydrocephalus are chronic conditions that present both physical and emotional challenges. Our aim is to empower these children with the skills and mindset needed to manage their conditions and integrate positively into society.”

Nalugya noted that some children experience sensory limitations, which can lead to untreated wounds and hygiene challenges. The camp provides a safe space for medical care, emotional support, and social interaction, equipping participants with tools to manage both physical and emotional health.

She highlighted incontinence as one of the key challenges faced by children with Spina Bifida, often leading to stigma and emotional withdrawal. “This training helps them manage such issues, avoid emotional trauma, and prevent behavioral problems that stem from social rejection, abuses and advisories.” she explained.

During the camp, participants presented their concerns to Mpigi District Assistant Health Officer, Margret Nanozi. Chief among their challenges was accessibility to schools, hospitals, transportation, places of worship, and public facilities such as toilets leisure centres and social centers.

They urged government officials to prioritize disability-inclusive planning and implementation, and called on schools to develop inclusive sports and recreational programs.

Muzahura Norbert, Clinical Coordinator at Neuro Kids Mulago, emphasized the importance of self-care while urging the government to make assistive devices more affordable and widely available. He also recommended that folic acid supplements be made accessible not just to pregnant women, but also to those planning for pregnancy, as a preventive measure against neural tube defects like Spina Bifida.

“Children with Spina Bifida should also be able to access healthcare services for common illnesses such as malaria at their local health centers,” he added.

In her remarks, Assistant District Health Officer Margret Nanozi commended SHAU for its work and reaffirmed the government’s commitment to disability inclusion. She noted that Uganda now requires all building plans to include ramps, and that non-compliant structures are being retrofitted to accommodate people with disabilities.

“Government has put in place policies and projects to support children with disabilities. The challenge remains full implementation,” she said. “What we need is increased advocacy and a shift in perception, both among government and non-government actors about the rights and capabilities of persons with disabilities.”

Nanozi urged medical officers at local health centres to treat all health concerns of children with disabilities, apart from those directly related to Spina Bifida or Hydrocephalus. She also encouraged the trainees to be responsible, disciplined, and confident, and to speak out in case of any form of abuse.

“You can live successful lives, get an education, find good jobs, marry, and raise families, just like anyone else. What matters is how you see yourselves and how committed you are to your personal growth,” she said.

Spina Bifida and Hydrocephalus are serious medical conditions. Hydrocephalus is characterized by the buildup of fluid in the brain’s cavities, which increases pressure on the brain. Spina Bifida, on the other hand, is a birth defect in which the spinal column does not develop properly, leaving part of the spinal cord and nerves exposed. The best preventive measure for Spina Bifida is the consumption of folic acid supplements before and during pregnancy. Both conditions require specialized medical care, which is only available at specific hospitals, including Mulago National Referral Hospital, Cure Children’s Hospital in Mbale, and Mbarara Regional Referral Hospital. However, there are only 12 surgeons in Uganda trained to treat these conditions.