By Kabuye Ronald
The Spina Bifida and Hydrocephalus Association of Uganda (SHAU), a local organization dedicated to improving the lives and empowering people with Spina Bifida and Hydrocephalus (SBH) for long-term, productive, and independent living, has announced plans to raise over 500 million Ugandan Shillings for the construction of its own centre. The centre is designed to accommodate at least 25 families per month, with the estimated cost of construction amounting to 500 million shillings.
During an event where Liberty Insurance and Moms’ Gather donated food, therapy toys, and other essential items for children with SBH, Ruth Nalugya, the Executive Director of SHAU, expressed gratitude to the partners for their ongoing support. She also highlighted the sustainability of this partnership, particularly with Moms’ Gather, which has established an income-generating initiative that trains mothers to make liquid soap and bleach. This project has benefitted many mothers, providing them with economic opportunities, as well as psychosocial support, including self-care training for mothers, children, and caregivers.
Nalugya emphasized the widespread yet silent nature of these two conditions, noting that they are often overlooked by program developers at the national level. However, Spina Bifida and Hydrocephalus are both highly prevalent, with statistics showing that Spina Bifida affects approximately 11.7% of every 10 births in Uganda, often accompanied by Hydrocephalus. Each year, more than 8,000 individuals are affected by these conditions.
Currently operating from a rented facility in Lubaga, Kampala, SHAU accommodates 240 families annually leaving a significant gap in meeting the needs of people living with SBH. Since these conditions are diverse, long term and urgent, and when a child is born with Spina Bifida, surgery must occur within the first 48 hours, while Hydrocephalus requires immediate intervention to prevent damage to the brain and other parts of the body.
However, Nalugya explained that if the organization is able to raise the 500 million shillings needed, they would be able to triple their capacity, serving 25 families every month. “Once a child arrives at the centre, the family stays here between one week to three months. During this time, we coordinate their care, offer psychosocial counselling, and provide education on how to care for their children,” Nalugya stated.
Additionally, Nalugya revealed that SHAU faces a critical shortage of medical supplies. To address this, the organization plans to set up a medical supply program, budgeted at 5 million shillings annually. Other proposed initiatives include a residential training program for 25 young people with Spina Bifida (budgeted at 36 million shillings), a Benevolence Fund (6 million shillings annually) to cater for descent grief and send off of children with SBH in case of death, 13 beds and mattresses (5 million shillings), a pre-and post-surgery feeding program (15 million shillings), and therapy mats and toys (4 million shillings).
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.
Joseph Almeida, the Managing Director of Liberty Insurance, urged for continued support for SHAU, reaffirming his commitment to working with the organization. Juliet Mulungi Okwi, the Head of Marketing and Customer Experience at Liberty Insurance, highlighted the need for increased awareness of SBH conditions. Through their partnership with Moms’ Gather and SHAU, Liberty Insurance plans to further raise awareness and provide financial support.
Lisa Kusiima and Sun Shine, social media influencers from Moms’ Gather, shared their experiences visiting SHAU’s offices. They expressed their gratitude for the information they gained about SBH and their desire to support SBH mothers in their communities. Over the past year, Moms’ Gather has been collecting in-kind donations, and this year they aim to make a bigger impact by collaborating with organizations like Liberty Insurance.
They also invited the public to their upcoming Moms Gather Gala, scheduled for May 3, 2025, at Kampala Serena Hotel. The event aims to empower mothers by providing financial literacy, professional advice, and other valuable resources.
These commitment to addressing SBH is also in alignment with the global Disability Summit taking place in Berlin, Germany. The global Spina Bifida and Hydrocephalus commitments aim to advance the implementation of the Convention on the Rights of Persons with Disabilities (CRPD) and contribute to achieving the Sustainable Development Goals (SDGs), particularly SDG 2 (ending malnutrition) and SDG 3 (ensuring health and well-being for all). The focus is on adopting a human rights-based approach to prevent neural tube defects (NTDs) and ensuring continuous, coordinated, and inclusive care for individuals with SBH throughout their lives, from childhood to adulthood.
