Rising above the obstacles of living with Spina bifida

Robert Nyabongoye, 38, was diagnosed with spina bifida cystica at birth, necessitating a delicate surgery at just three weeks old followed by incubation.

When his parents first saw the deformity, they were in shock. As days went by, they started worrying  about his future.

Spina bifida is a congenital defect in which the spinal column does not grow normally during the first few weeks of pregnancy, according to the National Institute of Neurological Disorders and Stroke.

The condition occurs when the spine and spinal cord don’t form properly. It’s a type of neural tube defect. The neural tube is the structure in a developing embryo that later becomes the baby’s brain and spinal cord and the tissues that enclose them.

Lower limb paralysis or issues with bowel and bladder function may occur from this persistent damage to the spinal cord and neurological system.

Fortunately for Robert, his father, who  worked in the Kenya Defence Forces Medical Unit, found him a neurologist to treat him, upon which his condition improved.

But this was short-lived for Robert, who is now a sustainable development and strategic planning consultant biased in climate change and African affairs.

“A few years later while in elementary school, I could not sit straight and I started slouching,” he says. He would also walk slowly.

 He explains that even worse he had to use the restroom frequently, which at first he did not consider to be an issue.

“One time while in Standard Six, I needed to use the toilet during an examination, but my teacher insisted I finish the test first. I accidentally peed on myself and became a laughing stock,” he narrates.

“That had a profound impact on me, and I still vividly remember that incident to date,” he says.

A year later, his legs’ calf muscles started to deteriorate, which caused him to lose his balance and fall once in a while. Since then, he has been limping despite regularly taking B1 and B2 vitamin tablets to boost his nerves.

Spina bifida is a permanently disabling birth defect. The defect, according to the World Health Organization (WHO), has been shown to exist for more than 1,200 years.

According to Robert, he experienced bullying and teasing while in campus. His peers imitated how he walked, leaving him with psychological trauma.

“As I was trying to fit in, I started acting rebellious. Later, I enrolled in Moi University’s Psychology programme to better understand what was wrong with me.

Robert suffers from urinary tract infections (UTIs). “I was forced to wear diapers as lecturers would not allow me to keep excusing myself,” he says, adding:  “I had to bladder-train myself, but I still get UTIs at least once every two months.”

In some communities, people with spina bifida face social stigma. Robert, who now has a doctorate and a master’s in international development, says he has experienced  discrimination due to his condition.

Even though he still has trouble controlling his bladder, Robert says his biggest worry is that eventually the muscles in his left leg will give way.

Nevertheless, a positive attitude has enhanced his life.

He currently serves on the board of the Gifted Community Center, which focuses on helping youth with disabilities. Robert has also taught at several universities . He runs his firm,  Naku-One Africa,  providing insights on emerging world affairs, climate change research and sustainable development trends specifically in Sub-Saharan Africa.

Risk factors for spina bifida include lack of folate, a family history of neural tube defects,  women with diabetes who have poor blood sugar control and certain medications such as anti-seizure drugs taken during pregnancy.

The exact cause of spina bifida is unknown. It appears to be caused by a confluence of genetic and environmental risk factors, according to Dr Joshua Ondari, an orthopedic and spine surgeon at Nakuru Level Five Hospital.

He says the birth defect occurs in around one per 1,000 births.

He emphasises that pregnant women must have access to healthcare because they need folate.

“It is advisable to operate on a child born with the defect within a week after delivery,” he explains.

According to research, there is no treatment for spina bifida cystica because the damaged nerve tissue cannot be repaired and the nerves’ function cannot be returned.

A report by the National Institute of Health estimates that more than 100,000 new cases of spina bifida occur annually in sub-Saharan Africa. In Kenya, three babies out of 10,000 born alive have the condition.

According to a 2014 study by Kenyatta National Hospital, central Kenya had the highest rate of spina bifida cases – 56 per cent — while Nairobi had the lowest rate at1.3 per cent.

According to a WHO report, folic acid can reduce birth defects by more than 70 per cent. The data predicts that women who take multivitamin supplements containing folic acid during the periconceptional phase may be able to cut in half the incidence of babies born with severe birth defects including spina bifida.

Spina bifida symptoms can range in type and severity. An abnormal hair tuft, a small dimple, or a birthmark can occasionally be seen on the newborn’s skin above the spinal defect.

In other instances, the membranes surrounding the spinal cord may protrude through the vertebral opening, creating a fluid-filled sac.

Dr Ondari notes that when medical care is available through maternal screening and ultrasound, the condition is identified either before or immediately after birth.

“Throughout their lives, these children should be monitored by a specialised medical staff and their families should be informed about the various complications to look out for,” Dr Ondari says.  

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