High cost of care, stigma put people with spina bifida, hydrocephalus at risk

In Nigeria, children born with spina bifida and hydrocephalus face overwhelming challenges—life-saving surgeries are costly, specialised care is scarce, and social stigma isolates families. Preventable conditions often become lifelong disabilities, underscoring a public health crisis that demands immediate attention, better awareness and accessible treatment for those most vulnerable, reports CHINYERE OKOROAFOR

When Olakunle Fayiga was born 36 years ago, doctors told his parents he had two serious congenital conditions—Spina bifida and Hydrocephalus. Spina bifida occurs when the spine fails to close properly during early pregnancy, damaging the nerves that control movement and bodily functions, while hydrocephalus involves a dangerous buildup of fluid in the brain that can cause the head to enlarge and impair development if untreated.

For many families, such a diagnosis can feel overwhelming. But Fayiga’s parents refused to give up. They sought treatment early and did everything within their means to give their son a chance at life. Their determination paid off. Today, Fayiga is a university graduate with a master’s degree. Though he has yet to secure stable employment, he dedicates his time to volunteering with the Spina Bifida and Hydrocephalus Association of Nigeria (SBHAN), where he advocates for the rights and dignity of people living with the conditions. His story is one of resilience—but also one of rare fortune.

Not every child born with these conditions is as lucky. Ten-year-old Ruth (not her real name) arrived late for treatment at the Lagos University Teaching Hospital in Idi-Araba. Her parents could not afford the life-saving surgery required when she was an infant. As a result, untreated hydrocephalus has caused her head to grow abnormally large, deepening her suffering and limiting her chances of a normal childhood.

For others, the challenges persist long into adulthood. John, another member of SBHAN, struggles with continence problems caused by nerve damage associated with spina bifida. The condition sometimes leads to involuntary urination or bowel accidents in public. The embarrassment and harsh reactions from people around him have taken a heavy emotional toll.

Education also remains a major hurdle. Aliyah Yusuf, a young woman from Ikorodu, gained admission into Lagos State University, formerly Lagos State Polytechnic. Yet she had to defer her admission because her programme is based at the Isolo campus, which lacks accommodation for persons with disabilities. These stories, shared by SBHAN National President Hassan Funmilayo and his team during a courtesy visit to The Nation’s corporate headquarters in Lagos, reflect the difficult realities faced by many Nigerians living with the conditions—ranging from unemployment and inaccessible infrastructure to high surgical costs and limited public awareness about prevention and early treatment.

Understanding spina bifida and hydrocephalus

Spina bifida is a birth condition that develops when a baby is still growing in the womb. It occurs when the baby’s backbone does not close completely during the early weeks of pregnancy. Normally, the spine forms like a protective tube that surrounds and shields the spinal cord and nerves. But in babies with spina bifida, part of this protective structure remains open.

When the spine fails to close properly, the nerves around the spinal cord can be damaged. This damage can lead to a range of health challenges. Some children may have difficulty moving their legs, while others may experience weakness or paralysis. Many also struggle with bladder or bowel control because the nerves that regulate these functions may not work properly.

In severe cases, a portion of the spinal cord and surrounding tissues may protrude through an opening in the back, leaving delicate nerves exposed and vulnerable to infection. Because of this risk, many babies born with spina bifida require surgery shortly after birth to close the opening and protect the spinal cord. Even after surgery, most children need ongoing medical care and rehabilitation as they grow.

Speaking on early detection, Funmilayo, National President of SBHAN, explained that the condition could sometimes be detected during pregnancy through ultrasound scans. However, he noted that it may not always be discovered early because the baby must reach a certain stage of development before the abnormality becomes visible. “I had a daughter who was born with this condition,” he said. “My wife and I did not know until two weeks before she was delivered.”

In some advanced healthcare systems, doctors can perform surgery on the baby while still in the womb to repair the spine. According to Funmilayo, such procedures can reduce complications and improve the child’s chances of better movement and brain development after birth. However, these specialised operations require sophisticated medical facilities and are not widely available in many countries, including Nigeria. Even when prenatal surgery is not possible, early treatment after birth can still make a significant difference. Funmilayo explained that surgery to repair spina bifida is typically carried out within the first 24 to 48 hours after delivery.

Many babies born with spina bifida also develop hydrocephalus, a condition in which excess fluid accumulates in the brain. Normally, this fluid circulates around the brain and spinal cord before being absorbed into the bloodstream. When the drainage process fails, the fluid builds up inside the brain’s cavities, creating pressure that can damage brain tissue and disrupt normal development.

In infants, hydrocephalus often causes the head to grow unusually large because the skull bones have not yet fused. Other symptoms may include vomiting, delayed development, vision problems and learning difficulties. Without treatment, the condition can lead to permanent brain damage or even death. Funmilayo explained that hydrocephalus is commonly treated through a procedure that places a small tube, known as a shunt, in the brain to drain excess fluid and relieve pressure. Based on available research, he added that between two and five babies in every 1,000 births may be affected by these conditions, meaning thousands of children could be living with them across the country.

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Prevention through folic acid

One of the most important messages highlighted during the visit was the role of folic acid in preventing birth defects such as spina bifida. Medical research shows that more than 70 per cent of neural tube defects can be prevented if women of child-bearing age take 400 micrograms of folic acid daily. Funmilayo advised that the supplement be taken at least three months before conception and during the first 12 weeks of pregnancy, when the neural tube is forming. He added that other factors—such as exposure to harmful chemicals during pregnancy and certain hereditary risks—can also contribute to the development of the condition. “Conception should be planned carefully. Medical practitioners advise women to take folic acid months before pregnancy to prepare the body and reduce the risk of neural tube defects,” he said.

Prohibitive cost of treatment

Beyond prevention, access to treatment remains a major challenge. Managing hydrocephalus requires specialised neurosurgery and long-term medical care. Funmilayo explained that doctors usually relied on two procedures. The first involves inserting a shunt, a small device that drains excess fluid from the brain into the abdomen, where it can be absorbed by the body. The second, known as endoscopic surgery, creates a new pathway within the brain for the fluid to drain naturally.

However, the cost of these procedures places them beyond the reach of many families. “In private hospitals, hydrocephalus surgery can cost between N5 million and N6 million. In public hospitals, the cost ranges from about N1 million to N2 million if it is not subsidised. When you add MRI scans, CT scans and medications, the total cost rises significantly,” he said.

He cited the case of a 10-year-old girl mentioned earlier whose treatment was delayed because her parents could not afford the surgery. She has since returned to hospital, and doctors say the operation is now critical to her survival. For many Nigerian families, such costs remain overwhelming.

Struggle for continence care

Another major challenge for people living with spina bifida is continence care. Because the condition can damage nerves that control the bladder and bowel, many patients struggle to manage these basic bodily functions. Proper continence care requires specialised training and medical supplies. Without it, patients often face daily embarrassment, stigma and serious health risks.

Funmilayo recounted the distress of one young man who recently reached out to him. “He told me he had lost hope. Wherever he goes, there is the smell of urine, or he cannot control his bowel movements. These are struggles many people with the condition face every day,” he said. He noted that the Festus Fajemilo Foundation (FFF), a founding partner of SBHAN, has helped bridge this gap by teaching continence management techniques such as Clean Intermittent Catheterisation (CIC). “But ideally this should be the responsibility of the healthcare system. Every major healthcare centre should be able to manage continence care, and medical professionals need proper training,” he said.

Currently, the Lagos University Teaching Hospital (LUTH) in Idi-Araba remains the only fully equipped centre for continence care in Lagos. Outside the state, only a few centres in Sokoto, Abuja and Port Harcourt offer similar services. Improper continence care can lead to severe complications, including urinary tract infections, kidney damage and, in extreme cases, kidney failure requiring dialysis. It also exposes patients to social discrimination and psychological distress. Funmilayo added that the association had engaged the World Health Organisation in efforts to institutionalise continence care within Nigeria’s healthcare system.

Despite the challenges, SBHAN continues to promote inclusion through advocacy, community programmes and sports activities. Members of the organisation were among wheelchair basketball players who participated in events during the visit of Prince Harry and Meghan Markle to Nigeria two years ago.

A call for government action

SBHAN is urging federal, state and local governments to take stronger action to support people living with these conditions. The association is calling for nationwide awareness campaigns on folic acid, subsidised hydrocephalus surgeries, expanded training for healthcare workers, improved access to continence care, inclusive infrastructure in schools and workplaces, and better national data on neural tube defects.

While a diagnosis of spina bifida or hydrocephalus often brings fear and uncertainty, Funmilayo believes the narrative does not have to end in despair. “We must show the world that there is hope. We should not focus only on gloom and doom,” he said. He recalled a powerful experience that strengthened his belief in possibility. A child was once brought to them with an extremely enlarged head and an exposed spinal cord—a severe form of spina bifida known as myelomeningocele. “We went to about six hospitals seeking help, but the advice we kept receiving was that the parents should allow the child to die,” he said.

The family refused to give up. Today, the child is alive and attending school—a reminder that survival is possible when families choose hope and when care is available. The story of Olakunle Fayiga, who grew up with the condition and went on to earn a master’s degree, offers another powerful example. For Funmilayo, such stories should not remain rare exceptions. With the right support, awareness and healthcare systems, they should become the norm.

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