The Spina Bifida and Hydrocephalus Association of Nigeria (SBHAN) has called on governments at all levels to subsidise drugs and treatment for persons living with hydrocephalus and spina bifida, describing the cost of care in Nigeria as overwhelming for many families.

Some survivors spoke to The Guardian during a courtesy visit by the association to the newspaper’s headquarters in Lagos, where they shared their experiences, challenges and advocacy demands.

They urged policymakers and healthcare stakeholders to prioritise early intervention and institutional support for people living with the conditions. Spina bifida is a congenital malformation of the spine and spinal cord that occurs during early pregnancy, often within the first four weeks before a woman may even know she is pregnant.

Medical experts link the condition to neural tube defects that occur when the spine fails to close properly during foetal development. Prevention is largely associated with adequate intake of folic acid before conception and during pregnancy. Hydrocephalus, which often occurs alongside spina bifida, is the abnormal accumulation of cerebrospinal fluid, commonly referred to as “water on the brain,” within the brain’s cavities.

The buildup of fluid increases pressure inside the skull and can lead to head enlargement, seizures and other neurological complications. In many cases associated with spina bifida, about 70 to 75 per cent of patients may develop hydrocephalus.

According to SBHAN, treatment for both conditions requires a multidisciplinary healthcare approach involving neurosurgeons for spinal closure and brain fluid drainage, urologists and nephrologists for continence management, plastic surgeons for complex wound repair, and long-term rehabilitation services.

Surgical procedures such as ventriculoperitoneal (VP) shunt implantation, a device inserted into the brain to drain excess fluid into the abdomen or endoscopic third ventriculostomy (ETV), which creates an internal drainage pathway without implanting a device, are often required.

The association stressed that beyond surgery, hydrocephalus requires lifelong care, regular monitoring and access to medication costs that many families struggle to bear. One of the survivors, Ngozi Onwueme, described hydrocephalus as a congenital condition that develops early in pregnancy.

“In the first four weeks of pregnancy, a woman may not even be aware that the baby has such a condition until after birth,” she said. “It is necessary for every woman of childbearing age to take proper care of herself, including taking folic acid daily, to help prevent such conditions.”

She explained that although surgery may be performed shortly after birth, patients often live with long-term complications. “These include urinary incontinence because the nerves that control bladder function may have been damaged,” she said.

Onwueme added that the condition can also lead to paralysis, forcing some patients to rely on wheelchairs or crutches. She noted that many survivors battle depression due to social stigma and isolation. “If not for our association and foundation, I know how many times I sat in my room crying and asking God, ‘Why me?’” she recalled. “I once had severe tension headaches, and my doctor later explained they were linked to depression. I didn’t even realise I was depressed.”

Now about 40 years old, she said many of her friends are unaware of her health status because she hid it while growing up due to bullying in school. “I have learned that hiding your condition is not the best. We need to speak out and counsel families. My mother once told me that when I was born, people advised her to abandon me. Imagine if she had done that. Today, I am a teacher contributing to society.”

She expressed concern about families who may receive wrong advice to abandon babies diagnosed with hydrocephalus, noting that many affected children have been deserted. Onwueme said the association is seeking partnerships to deepen awareness campaigns and educate the public on prevention and early intervention.

According to her, public enlightenment is essential to reduce stigma and ensure access to education, transport, employment opportunities and inclusive participation in society.

Another survivor, Olakunle Fayiga, 36, said he was born with hydrocephalus at a time when corrective surgery was not readily available in Nigeria. He was taken to France four weeks after birth for treatment. “Doctors told my parents they came late. There is a need for urgent treatment because the longer the delay, the more damage it causes,” he said.

Fayiga added that he began experiencing seizures and epilepsy during primary school, conditions sometimes associated with hydrocephalus. “It was embarrassing when seizures happened during class hours. Teachers would call my parents, who rushed me to the University College Hospital (UCH), Ibadan. I was on anti-epileptic drugs for over 20 years and also suffered severe headaches during that period,” he said.

He emphasised that early diagnosis and prompt medical care significantly improve outcomes for patients.

The national president of SBHAN and a parent of a survivor, Hassan Funmilayo, said that despite available treatment options, access remains limited due to high costs and inadequate institutional support.

The association called for the integration of specialised care into primary and secondary healthcare systems and the establishment of dedicated continence management centres to support lifelong care. Funmilayo also advocated the establishment of clean intermittent catheterisation (CIC) centres at primary healthcare facilities to train patients and caregivers on proper bladder and bowel management.

He stressed that improved data collection is necessary to determine the actual number of persons living with the conditions and to guide effective planning. He called for the institutionalisation of care within federal and state health systems to ensure survivors benefit from government-backed support rather than relying solely on partner organisations and non-governmental assistance.

Funmilayo highlighted the need for multidisciplinary care, including neurosurgical intervention, continence management and rehabilitation services. He lamented the high cost of treatment, noting that surgical procedures at private facilities may cost between N4 million and N5 million, while public hospitals charge lower but still substantial amounts, excluding diagnostic tests such as MRI and CT scans.

He said prevention through folic acid awareness, early detection and subsidised treatment would reduce mortality and improve outcomes. Funmilayo maintained that the experiences shared by survivors demonstrate that with timely intervention, structured support and public awareness, persons born with these conditions can live productive and meaningful lives.