Living life to the full despite challenges from spina bifida

It’s every mother’s desire to give birth to a healthy baby. But this is not always fulfilled as some babies are born with conditions that can be life threatening.

Ever heard of spina bifida?

According to the National Institute of Neurological Disorders and Stroke, spina bifida is a congenital anomaly where the spinal column does not develop normally during the first weeks of pregnancy.

This causes permanent damage to the spinal cord and nervous system, and can result in paralysis of the lower limbs or problems with bowel and bladder function.

When Mr Robert Nyakundi, 34, was born at Mater Hospital, he was diagnosed with spina bifida cystica which saw him undergo a delicate surgery, followed by incubation when he was only three days old.

His condition presented a tremendous initial shock to his parents and they developed a sustained fear for Mr Nyakundi’s future.

Luckily, his father was in the medical department in the Kenya Defence forces hence he got his son the best neurologist to handle his case. But this became short-lived.

“I could not sit straight and I started slouching but not even my parents knew why,” he said.

In an interview with Nation, Mr Nyakundi opened up about his challenging upbringing, bullying and stigmatisation from both his peers and society.

BULLYING

In primary school, he noticed that he was slower in physical activities. But the worst was having to visit the toilet more frequently than others, something he thought was normal at first.

“During a test in Class Five, I wanted to go to the toilet, but my teacher insisted that I finish the test first. I wet myself unknowingly, and I became the school’s laughing stock. That ordeal affects me till date,” he says.

Mr Nyakundi admits that the ostracisation and bullying from his peers started then, going on all through campus, leaving him psychologically traumatised.

A series of ordeals followed him. In Class 7, his calf muscles began to degenerate. He lost balance and fell. He has been limping since, despite taking B1 and B2 vitamin nerves continuously to boost his nerves.

Curses and witchcraft became cliché terms used in gossip by Mr Nyakundi’s friends and neighbours' in trying to explain his condition.

Spina bifida is permanently disabling and a poor community attitude casts a dark shadow upon the lives of those living with it.

The defect, according to the World Health Organization, has been shown to exist for more than 1200 years.

It falls under the broader category of neural tube defects. The neural tube is the embryonic structure that eventually develops into the baby's brain, the spinal cord and the tissues that enclose them.

 “I became rebellious against my father even as I struggled to fit in. I later joined Moi University to study psychology in a bid to help me understand what was wrong with me,”he says.

Apart from doing six academic researches on topics of social sciences and development, he has also delved into areas of gender mainstreaming and reproductive health development. He now holds a doctorate degree in sociology and a masters in international development.

Mr Nyakundi, who is now a strategic planning consultant on climate change adaptation and mitigation planning, has taught in several universities.

He also sits on the board of the Gifted Community Center which empowers the youth with disabilities to fend for themselves.

Controlling his bladder is still an issue, and he says that he has suffered professional discrimination because of his condition.

 “I had to wear diapers because long lectures wouldn’t allow me to step in and out of lecture rooms. I visit the toilet more than fifteen times to date.”

URINARY TRACT INFECTIONS

He also suffers a series of Urinary Tract Infections, something he will live with for the rest of his life.

“I had to bladder-train myself but I still get UTI at least once in every two months. I have faced a lot of rejection because of my condition,” he laments.

His greatest fear today is that his left leg muscles will give in someday.

FACT BOX

Spina Bifida is diagnosed before or right after birth, when medical care is available through maternal screening and ultrasound.

According to Dr Joshua N. Ondari, an orthopaedic and spine surgeon at Nakuru Level 5 Hospital, spina bifida affects one to two people in 1000.

“Spina bifida cystica causes a bony and a skin defect where the nerves and the surrounding fluids budge out,” says Dr Ondari.

“After birth, babies with this defect are those whose neuro elements are in the cyst. It’s advisable to operate on the child within a week, although the cost of surgery is from Sh50000,” he says.

But surgery does not fully resolve the problem.

The signs and symptoms of spina bifida also vary by type and severity.

Visible indications can sometimes be seen on the newborn's skin- above the spinal defect, including an abnormal tuft of hair, or a small dimple or birthmark.

In other cases, the membranes around the spinal cord may push out through an opening in the vertebrae, forming a sac filled with fluid.

Affected children need a specialized team of doctors throughout their lives. Their families should also be educated on the complications to watch out for.

Doctors are not certain what causes spina bifida but as with many other problems, it appears to result from a combination of genetic and environmental risk factors.

Some of the risks are folate deficiency and family history of neural tube defects. Pregnant women who take anti-seizure medication and diabetic women who don’t control their blood sugar levels have a higher risk or having a baby with spina bifida.

Access to healthcare is important to pregnant mothers as they need folate.

Studies have shown that there is no cure for the defect because the damaged tissue cannot be repaired, nor can function be restored to the damaged nerves.

More than 100,000 new cases of spina bifida occur annually in sub-Saharan Africa. In Kenya, three out of 10,000 babies born have spina bifida.

A study done in 2014 by the Kenya National Hospital showed that Central Kenya had the highest cases of spina bifida with 56 per cent and the least in Nairobi with 1.3 per cent.

A report by WHO indicates that spina bifida can be reduced by up to 70 per cent if the mother takes adequate amounts of folic acid every day before conceiving.