ABOUT SPINA BIFIDA AND HYDROCEPHALUS
Spina Bifida is a congenital condition that is characterized by the premature development of a baby’s spinal cord. According to global statistics, Spina Bifida occurs in approximately one in every thousand births; thus, over 1 million people are living with spina bifida globally. Nonetheless, the occurrence of the defect varies across countries and individuals.
Hydrocephalus, however, is marked by a buildup of fluid in the cavities deep within the brain. Excessive fluid pressure on the brain can lead to brain damage. It is commonly seen in infants and older adults. Spina Bifida and Hydrocephalus (SBH) have become a public health concern, especially in developing countries; however, the knowledge and awareness of Spina Bifida and Hydrocephalus (SBH) remain limited, especially in Ghana.
In Ghana, not much is known about Spina Bifida and Hydrocephalus (SBH) and its Management. According to Ofori et al, out of 6,550 CT head examinations that were carried out between 2007-2012, 251 (representing about 3.8%) were cases of Hydrocephalus. In the Northern region of Ghana, the prevalence of Neural Tube Defects NTDs is 1.6 per 1000 births. Korle Bu Teaching Hospital estimates that every week, five (5) new cases of SBH are recorded, with a Total of 260 cases in a year, and KATH records 170 cases annually. There are, however, no available records from GRAH, CCTH, 37 military, and other referral hospitals. This situation has led to many unpleasant experiences for persons with Spina Bifida and Hydrocephalus and their caregivers. They often face family conflicts, feelings of loneliness, rejection, ridicule, mockery, alienation, and financial challenges.
Furthermore, cultural beliefs that attribute SBH (locally referred to as Asram) to spiritual causes have significantly hindered effective management of the conditions. Such misconceptions often result in delayed access to medical care and intervention.
In addition, limited knowledge among some healthcare professionals further impedes effective management, as many are not fully aware of the conditions or their specific needs. Moreover, there is limited public knowledge regarding the prevention of these conditions.
To address these challenges, we are committed to intensifying awareness campaigns and engaging all stakeholders to challenge misconceptions, promote understanding, and ensure timely access to quality healthcare for all persons living with SBH.
Spina Bifida and Hydrocephalus are socio-medical conditions that require both social and medical interventions for effective management. Poverty and cultural beliefs remain major barriers to accessing healthcare for persons with SBH and their caregivers in Ghana.
ABOUT WORLD SPINA BIFIDA AND HYDROCEPHALUS DAY
Introduction;
The World Spina Bifida and Hydrocephalus Day (WSBHD) was established and designated by the International Federation for Spina Bifida and Hydrocephalus during a General Meeting held in Guatemala in 2011, to raise awareness and promote understanding of Spina Bifida and Hydrocephalus (SBH). The first WSBHD was officially observed on 25th October 2012 at the European Parliament in Strasbourg.
The maiden edition of WSBHD in Ghana was observed in 2020, through a collaboration between HopeXchange Medical Center in Kumasi and SBH Foundation-Ghana. The event was attended by 120 participants, including caregivers, clinicians, researchers, policymakers, and traditional leaders. The side event for WSBHD 2020 was held under the theme “Change Your Misconception.”
In 2021, the second WSBHD was organized in partnership with the Greater Accra Regional Hospital and the Pediatric Society of Ghana, under the theme “Unlocking the Right to Health.” From 2020 to 2024, these annual events have provided valuable platforms for caregivers to share their experiences and challenges, while medical professionals and key stakeholders delivered insightful presentations aimed at improving awareness, care, and advocacy for persons living with SBH.
WORLD SPINA BIFIDA AND HYDROCEPHALUS DAY 2025
In 2025, SBH Foundation-Ghana will join the international community in celebrating World Spina Bifida and Hydrocephalus Day (WSBHD’25). As part of the celebration, the Foundation will host a side event in Kumasi at the House of Hope, in collaboration with the Komfo Anokye Teaching Hospital (KATH), under the theme: “Accelerate for Action: Unlocking Minds, Unleashing Potential.”
The celebration will run from 1st October to 28th October 2025. During this period, we seek to inspire immediate and collective action to raise awareness and support for persons living with Spina Bifida and Hydrocephalus (SBH) in Ghana. The focus will be on addressing challenges, misconceptions, and cultural beliefs surrounding the conditions while encouraging caregivers, families, and communities to concentrate on possibilities rather than limitations.
The event will also bring together key stakeholders to explore the barriers affecting access to quality healthcare for persons with SBH and to promote equal access to comprehensive and compassionate medical care across the country.