WORLD SPINA BIFIDA AND HYDROCEPHALUS DAY, 2025
CONCEPT NOTE
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 an extrapolated one among every thousand childbirths,thus there are over 1 million people living with SBH globally. . Nonetheless, the incidence of the deformity varies from country to country or individually to individually. Hydrocephalus on the other hand, is characterized by pile-up of fluid in the cavities deep within the brain.The extrafluid-pressure on the brain can result in brain damage. It is commonly prevalent in infants and older adults. Spina Bifida and Hydrocephalus (SBH) have become a public health concern, especially in developing countries, however, the knowledge gap on SBH is 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 NTDs is 1.6 per 1000 births. KorleBu 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 of 170 cases annually. No records I know of GRAH, CCTH, 37 military and other referral hospitals. This has been an unpleasant observation that persons with SBH
and their caregivers have been experiencing family conflicts, feelings of loneliness, rejection of their self-worth by friends and family members,ridicule and mockery, alienation,and financial constraints. On the other hand, cultural beliefs that associate Spina Bifida and Hydrocephalus (SBH) (ASRAM) which are spiritual causes have significantly affected the management of the conditions. Such misconceptions often lead to delayed access to medical care and intervention. In addition, the limited knowledge among some healthcare professionals further impedes effective management, as many are not fully aware of the conditions or their specific needs. Again, these are little known of the prevention of the conditions
To address these challenges, we are committed to intensifying our awareness campaigns and bringing all stakeholders on board 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 which need both Social and medical interventions in managing them.Poverty and cultural beliefs have remained the major barrier in accessing healthcare among persons with SBH and their caregivers in Ghana
ABOUT WORLD SPINA BIFIDA AND HYDROCEPHALUS DAY
Introduction;
The WSBHD has been established and designated by the International Federation for Spina Bifida and Hydrocephalus’ in a general Meeting at Guatemala in 2011 to raise awareness and understanding about SBH. The WSBHD was held for the first time on 25 October 2012 at the European Parliament in Strasbourg.
The maiden edition of WSBHD was observed in Ghana in 2020 with collaboration with HopeXchange Medical Centre in Kumasi SBH Foundation-Ghana. The event was attended by 120 people which were Caregivers, Clinicians, Researchers, policy makers, and Traditional leaders. This side event of the WSBHD’20 was with the theme; Change your Misconception. In 2021, the second WSBHD was observed in collaboration with Greater Accra Regional Hospital and Pediatric Society of Ghana under the theme ‘Unlocking the Right to Health’. This event has offered caregivers the opportunity to share their challenges and presentations from medical doctors and other personalities from 2020 to 2024.
WORLD SPINA BIFIDA AND HYDROCEPHALUS DAY’2025
In WSBHD’25 SBH Foundation-Ghana joined the international community to celebrate this day. SBH Foundation Ghana will have a side event in Kumasi -house of hope in conjunction with kmofo Anokye teaching hospital under the theme “Accelerate for Action: Unlocking Minds, Unleashing Potential. From 1st October to 25th October 2025. During this celebration, we seek to urge immediate, collective effort to raise awareness and support about SBH,Challenges misconceptions and cultural beliefs in Ghana about persons with SBH and, Inspires caregivers, families, and communities to focus on possibilities, not limitations.We intend to bring interested stakeholders to explore the barriers to the quality health care for SBH and to ensure equal quality healthcare for persons with SBH.
OBJECTIVES
- To raise awareness and promote the right of persons with SBH and advocating for more NTDs prevention, surveillance, care, and research in Ghana
- To accelerate timely access to diagnosis and care
- To inspire caregivers, family and communities to focus on possibilities not limitations.
- To upgrade clinicians and caregivers, and the public knowledge on the management of SBH.
WSBHD’25 ACTIVITIES PLANNED
| NO | ACTIVITIES | SPECIFIC OBJECTIVES | STRATEGIES | SPECIFIC DATE | COLLABORATORS | OUTCOME |
| 1 | Launching of the Event | To create awareness of WSBHD2025 To all for public action on SBH awareness | Release of article/press and toolkit that will be published on the newspapers and social platforms. Targeted platforms; daily graphic, the spectator, chronicle, Ghana web, etc. Media interviews, on the TV or FM station and Facebook live. | 1ST October 2025 | KATH ,GHS | The people of Ghana will get to know about the SBH. This will contribute for people to follow the organization and read more about SBH. |
| 2 | Infographic materials. | To create awareness and educate the public. | Posters and banners of SBH will be posted at vintage place like the hospitals Flyers for social media. Sharing of Key messages | 1st to 24th October, 2022 | KATH, GHS | It will help to improve the knowledge and awareness about on SBH |
| 3 | Media and community Advocacy | To educate the public on SBH To create Awareness of SBH | Visitation to the media housesTargeted media houses; UTV, TV3, GHone, CITI TV, Adom TV, GTV, Joy prime, Accra FM, Neat/ peace FM, Kingdom FM, etc.Compilation of stories and videos of SBH from patients and caregivers. This will be shared on the social media platform Video interview with HCPs, parents, and people living with SBH. This will be posted on various social handles of the organization as well as that of the international federation for SBH. Creating educational videos on SBH be played on the media stations or the hospital OPD TV.Visitation to the community such as the Churches. | 2nd October to 23rd October 2022 | Media outlets ,GHS | The negative perception of Ghanaians will be reduced.It will help to improve the understanding of the Ghanaians about SBH |
| 5 | Durbar at House of Hope | To explore the barriers SBH faces in accessing health care.To establish a structured and excellent support. To call for collective effort in addressing SBH issue in Ghana . | A stakeholder engagement event will be held on October 25th to climax the event. Targeted speakers; Ministry of Health, Ghana Health Service, NIHS, Minister of Ashanti region, MP of Bantana, Chief of Abrepo, Ministry of Gender Children Social Protection, Paediatric Society of Ghana, Neurosurgeon Association of Ghana. KATH, parents of persons with SBH and persons living with SBH To show case talents and success stories of children with SBH To raise fund to support SBH activities at the HOUSE OF HOPEExpected Participants: 150venue ; House of hope -Abrepo Highways Time; 10am-1pm | 25th October 2022 | KATH | This will contribute to establish a support framework for the effective management of SBH in Ghana. |
🌍 Key Messages for World Spina Bifida and Hydrocephalus Day
- Children and adults living with Spina Bifida and Hydrocephalus (SBH) deserve equal access to healthcare, education, and opportunities to live fulfilling lives.
- Awareness and access to quality healthcare can prevent complications and improve long-term outcomes for people with SBH.
- Parent Support Groups and peer counselling are essential in helping families cope, share experiences, and advocate for better care.
- SBH is a medical condition—not a curse or spiritual punishment. Together, we can challenge harmful beliefs and create inclusive communities.
- Daily folic acid intake before and during early pregnancy can significantly reduce the risk of Spina Bifida and related neural tube defects.
- Collaboration among governments, healthcare providers, NGOs, and communities is key to improving the lives of those affected by SBH.
- Through initiatives like the House of Hope, families find temporary shelter, emotional support, and renewed strength on their journey.
- This year’s call to action reminds us that awareness must lead to tangible change—improving access, equity, and inclusion for persons with SBH across the world.
- Together, we can build a world where every child born with SBH has the chance to live with dignity and purpose.