Foundation seeks improved access to care for people with spina bifida, hydrocephalus

The Festus Fajemilo Foundation is seeking improved access to specialised healthcare for people living with spina bifida and hydrocephalus, as it plans to establish a dedicated centre to provide treatment, care and support for affected individuals.

The foundation said the proposed facility would address some of the challenges confronting patients and their families, particularly limited access to treatment, rehabilitation and long-term care.

The Foundation disclosed this at its launch of the 20-Year Impact Report, which forms part of the FFF 20th anniversary ceremony themed “Two Decades of Dignity, Access and Equal Opportunity”.

Speaking at the event, the Co-founder and Executive Director of FFF, Afolabi Fajemilo, decried the unavailability of standard rehabilitation pathways for spina bifida and hydrocephalus patients in Nigeria.

According to him, the planned Centre for Spina bifida and Hydrocephalus by FFF was to ensure people living with the condition could receive appropriate medical attention and other essential services to improve their quality of life in a single facility.

“We have designed a centre of our own: a Centre for Spina Bifida and Hydrocephalus. We want to have a place that will serve as a home for research and rehabilitation.

“There is still no standard rehabilitation pathway for individuals living with these conditions in this country,” Fajemilo said.

PUNCH Healthwise reports that spina bifida is a birth defect that occurs when the spine and spinal cord do not develop properly, while hydrocephalus is a condition characterised by an abnormal build-up of fluid in the brain, which can cause lifelong complications requiring sustained medical management.

Furthermore, the FFF executive director noted that establishing the centre would also help address gaps in awareness, patient support and access to specialised services.

“We want to establish it as a centre that will serve as a hub for healthcare professionals from all around the world. We also want to have research facilities and our own imaging section, with CT scan and MRI services.

“Whenever any of our beneficiaries experiences an emergency, the first thing healthcare professionals request is a CT scan or MRI. These are very expensive medical tests. If we have such facilities in our centre, even if the services are not provided free of charge, they can be offered at a very discounted rate,” he said.

Fajemilo urged the Federal and State governments to ensure spina bifida and hydrocephalus are included in the country’s health and disability frameworks.

“We need to ensure that spina bifida and hydrocephalus are enshrined in our national health and disability frameworks so that individuals living with these conditions can benefit from the support systems. A child should not be turned away from a health facility because the family cannot afford to pay,” he said.

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The FFF co-founder added, “Individuals with spina bifida and hydrocephalus can experience seizures. When they experience seizures and need to be taken to a health facility, they should receive the necessary care.

“We are calling for enabling policies that will guarantee the rights of individuals living with these conditions. The fact that a person has a disability, or was born with spina bifida, does not mean that the person should not live. We need to ensure that our health insurance scheme works and covers everyone, including people living with spina bifida and other disabilities.”

Over the last 20 years, Fajemilo said FFF has worked tirelessly with individuals living with spina bifida and hydrocephalus.

“From 2006 to 2026, we have had several opportunities to improve their well-being through healthcare support, advocacy, disability inclusion, empowerment, inclusive education, health, and other supportive initiatives.

“The long journey over the last 20 years has been challenging, but with partners, friends, and support from different quarters, we have been able to sustain this work for two decades.

“We started with babies. Now, some of them are in their teens and twenties. Some of those who had not even started schooling when we began are now graduates, working and becoming self-advocates for their disabilities,” he said.

According to him, we have been able to build a community of people living with spina bifida and hydrocephalus in Nigeria, giving them a voice, confidence and self-esteem.

“We have reached up to 400 families. Currently, we are working with 11 teaching hospitals in 5 geopolitical zones, providing disability-inclusive continuous healthcare,” he said.

Also speaking, the Permanent Secretary, Lagos State Ministry of Health, Dr. Dayo Lajide, commended FFF for its contribution to improving the quality of life of patients living with spina bifida and hydrocephalus in Nigeria.

“This celebration creates an opportunity to reflect on the importance of collaboration between government, NGO, development partners and communities in addressing healthcare challenges.

“As a ministry, we recognise that achieving universal health coverage goes beyond providing healthcare facilities and services; it also requires ensuring that no individual is left behind regardless of their economic conditions and socio-economic circumstances.

“We therefore encourage sustained advocacy, early detection, access to appropriate healthcare services, rehabilitation and social support for individuals living with spina bifida and hydrocephalus,” Lajide, who was represented by Dr. Olajumoke Aromashodu, said.