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SHAU calls for strict observance of the comprehensive Spina Bifida Care Protocol and collaborative efforts

By Kabuye Ronald

National coordinator for Spina bifida and Hydrocephalus Association (SHAU), Ruth Nalugya has called for strict following and observance of the comprehensive Spina Bifida Care Protocol and collaboration between all stakeholders in order to Spina bifida birth defect.

Ruth Nalugya made the remarks during her briefing to the media team in Kampala at SHAU headquarters.

Nalugya emphasized the need for collaborative efforts among Healthcare providers, government entities, NGOs, and charitable institutions to ensure early detection, access to comprehensive care, and long-term support for those affected by this condition.

“By working together,we can contribute to the  reduction of the burden of Spina bifida and provide a better quality of life for all individuals regardless of their economic circumstances.” Said Nalugya

Spina bifida is a congenital birth defect that affects the spinal cord and it is a significant health concern worldwide. However, it is particularly prevalent in low-income developing countries, where limited resources and healthcare infrastructure make it challenging to provide adequate care.

The World Health Organization’s Spina Bifida Care Protocol focuses on providing a holistic and multidisciplinary approach to the management and treatment of individuals with Spina bifida. It emphasizes the importance of early detection, prevention, comprehensive care throughout the individual’s lifespan, and the involvement of various healthcare professionals.

Nalugya highlighted the following as the general key components of the care protocol:

Prenatal screening and diagnosis: Encouraging early detection of Spina bifida through prenatal screenings, such as ultrasound examinations. Early identification allows for appropriate counseling and planning for the medical and psychosocial needs of the affected child and family.

Folic acid supplementation: Promoting the use of folic acid supplements by women of childbearing age. Adequate folic acid intake before and during early pregnancy has been shown to significantly reduce the risk of Spina bifida. However, this may vary and therefore, the country’s healthy guidelines should be considered.

 Surgical intervention: timely and appropriate surgical treatment to address the spinal cord malformation associated with Spina bifida should be recommended. Neurosurgical procedures aim to minimize further spinal cord damage and prevent complications such as hydrocephalus.

Comprehensive care and rehabilitation: Encouraging a multidisciplinary team approach, involving healthcare professionals from various fields such as neurology, urology, orthopedics, physical therapy, occupational therapy, and speech therapy. This approach ensures comprehensive care and addresses the individual’s functional limitations, neurogenic bladder and bowel management, mobility, and psychosocial needs.

Education and support: Providing educational resources, support, and counseling to individuals with Spina bifida and their families. This includes information on the condition, treatment options, and prevention of complications, support groups, and community services.

Long-term follow-up: Emphasizing the importance of regular and lifelong follow-up care to monitor the individual’s health, address any emerging complications, and provide necessary interventions as the person with Spina bifida progresses through different life stages.

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