Festus Fajemilo Foundation (FFF), a disability-focused non-profit organization in Nigeria, recently held a media sensitization training to raise awareness and promote the inclusion and rights of individuals with Spina Bifida and Hydrocephalus (SBH).
The event was part of the organization’s continued efforts to inform the populace, impact the lives of individuals with SBH, and provide vital support to families and caregivers with the right information.
Founded with a mission to advocate for individuals with SBH, FFF has been actively engaged in various initiatives to enhance access to healthcare and support services. The foundation is particularly committed to primary prevention and improving the quality of life for persons with SBH in Nigeria.
During the media sensitization program, Afolabi Fajemilo, the Director and Co-founder of FFF, spoke about the foundation’s Saving Lives! Improving Futures (SLIF) Project, one of the ongoing interventions of FFF in collaboration with Shine UK since 2016.
The project, which according to Fajemilo, is the first targeted intervention for persons with Spina Bifida and Hydrocephalus in Nigeria, is being funded by the UK Department of Health & Social Care, managed by Global Health Partnerships (Formerly THET) & Ducit Blue Solutions.
Providing a background to the needs of persons with SBH, Fajemilo explained that “babies born with spina bifida, a condition that develops before birth, face lifelong, complex health issues, including mobility loss, pain, learning difficulties and double incontinence. If not managed correctly, incontinence can lead to potentially fatal bowel and bladder complications.
“Many children with spina bifida and hydrocephalus, and their families, in Nigeria live in severe poverty owing to high cost of managing children with SBH. They face financial constraints, unable to afford continence products (e.g. nappies) and/or transportation to hospital. There is also a lack of access to adequate information on managing incontinence, which leads to recurring infections and more complex health issues. The knowledge gaps among healthcare practitioners has not helped matters either.
“Any person living with incontinence is psychologically affected by it; self-esteem is low, educational opportunities are reduced, and employment is difficult to obtain. Relationships between family and friends are hard to maintain,” Fajemilo explained.
To address this challenge through the SLIF Project, FFF in collaboration with Shine UK has built the capacity of healthcare workers across Nigeria, to provide quality continence care & management for children with spina bifida. The foundation also engages outreach workers to serve as intermediaries between the health facilities and families, to ensure that persons with SBH continue to access uninterrupted quality care.
The Foundation currently partners with 8 public tertiary health facilities in 5 of the 6 regions of Nigeria as well as 6 communities to provide non-hospital-based support to families of children with spina bifida.
Speaking on the impact of the project, Fajemilo noted that “this project has been focused on helping persons with SBH access continence care, training nurses, supporting public health facilities to establish dedicated continence care & management clinics. Our initial goal was to reach 250 babies, and although we are yet to fully achieve this target, we have already reached 240 babies, with the hope of meeting the goal before the project ends.”
The main objectives of the SLIF project, as outlined by Fajemilo, include training 89 nurses, improving the quality of care provided in clinics, and ensuring that families have access to appropriate healthcare services including free supplies of continence kits. Although the project has made significant progress, Fajemilo acknowledged that there is still work to be done to reach all the intended beneficiaries.
Lara Fernandez, a social worker and project volunteer with FFF, educated attendees about Spina Bifida, its causes, and the challenges faced by individuals with the condition.
She explained that Spina Bifida often presents as a small black patch, a swelling on the back, or even a dimple, and its severity depends on how high up the back the defect is located.
“The higher the defect, the more severe the case,” said Fernandez. “In some cases, it may cause difficulty controlling the bladder and bowels, increased risk of infections, and mobility issues.”
She continued, “A physical examination may reveal abnormalities such as a tuft of hair on the back, which can indicate an underlying spinal issue. Some people with Spina Bifida may experience mild symptoms, while others may have more severe disabilities, including paralysis or weakness in the limbs. With proper care and support, many people with Spina Bifida can lead relatively normal lives.”
Fernandez also discussed the vital role of folic acid in preventing birth defects like Spina Bifida.
She emphasized that women, especially those of reproductive age, should start taking folic acid supplements from a young age.
“Girls should start taking folic acid around age 20, as they approach marriage age,” she said. “A balanced diet is important for everyone, but for young women, consuming foods rich in folate or taking supplements can help prevent birth defects like Spina Bifida.”
Mrs. Sarat Ojei, Deputy Director of Nursing Services at the Lagos University Teaching Hospital (LUTH) and lead specialist continence nurse for the SLIF project, also addressed the gathering.
She spoke about bladder and bowel incontinence, which are common among individuals with spina bifida and hydrocephalus. she also emphasized the importance of timing and sensitivity when discussing congenital anomalies with patients, noting that treatment plans must be tailored to the individual.
“When patients have multiple anomalies, it’s crucial to approach treatment with a multidisciplinary team to ensure comprehensive care,” said Ojei. She also mentioned the importance of educating individuals with SBH about managing bladder pressure and preventing complications such as kidney damage.
Mrs Ojei explained the technique of Clean Intermittent Catheterization (CIC), which helps patients maintain healthy bladder function. “We teach patients how to perform CIC, a process that can help avoid infections and other complications related to bladder pressure,” she added. “In some cases, improvisation is necessary, such as using a bottle of water to assist with toileting in a private or shared space.”
The event also featured a call to action from Mr Fajemilo, who passionately advocated for the rights and care of children with spina bifida. “Children with Spina Bifida are human beings and should not be terminated or abandoned. They deserve care and love, just like any other child. We must continue to fight for their right to live and receive proper care,” he added.
He also made a public appeal to the Nigerian government, urging them to take more significant steps to support individuals with spina bifida and hydrocephalus. He commented on good health outcomes for people with SBH in countries where a multi-disciplinary approach is in place, urging Nigeria’s health authorities to copy this type of good practice.
“The government must invest in healthcare infrastructure, ensure that medical professionals are trained in disability-inclusive care, and provide support for families and caregivers who are raising children with these conditions,” he said.
The event concluded with a renewed commitment from the foundation to achieve its goals and ensure that people with spina bifida and hydrocephalus are not left behind.