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Nine-year-old battles brain diseases

Seated in a newly-acquired wheelchair, Peter Wafula cannot speak, walk, seat or feed himself.

His mother, Lilian Musindo, keeps chasing flies from his T-shirt soaked in saliva that is uncontrollably flowing out of his open mouth. One outstanding feature is his abnormally big head which his mother keeps repositioning, lest it leans against his chest or shoulder.  

An interaction with his father, Michael Musindo, reveals that Wafula was born with spina bifida and hydrocephalus. I met Wafula at Masafu hospital in Busia district, where he had just acquired one of the wheelchairs donated by the National Population Council ahead of recent World Population day.

THE DEFECTS

Spina bifida is a birth defect featuring incomplete closing of the backbone and membranes around the spinal cord. According to Dr Sabrina Kitaka, a paediatrician and senior lecturer at Makerere University’s college of health sciences, spina bifida is a type of neural tube defect. The neural tube is the structure that develops into the baby’s brain and spinal cord.

“The neural tube starts to form in early pregnancy, and closes about four weeks after conception,” she says. “In spina bifida, part of the neural tube doesn’t develop or close properly – leading to defects in the spinal cord and bones of the spine.”

Dr Kitaka says it is not known what exactly causes spina bifida, but lack of folic acid before and in the early stages of pregnancy is a significant risk factor.

Hydrocephalus, which Musindo believes his son was also born with, involves abnormal accumulation of cerebrospinal fluid in the brain.

The condition causes increased intracranial pressure inside the skull and may cause progressive enlargement of the head if it occurs in childhood, potentially causing convulsion, tunnel vision, and mental disability.

Dr Kitaka explains that hydrocephalus can be congenital, or present at birth. Causes include genetic problems and complications with how the foetus develops.

She adds that hydrocephalus can also happen after birth due to head injuries, strokes, infections, tumours and bleeding in the brain.

The connection between the two conditions, she says,  is that spina bifida can get infected or compress the cord and lead to hydrocephalus.

Dr Kitaka explains that since assessment of women is not always possible, recommendation is for every woman to start folic acid when she is planning to get pregnant, misses her period or confirms that she is pregnant.

“Women thought to be at higher risk of having a child with spina bifida need to be prescribed a higher (five milligrams) dose of folic acid by their GP [General Practitioner],” she says.

AIDING THE PATIENT

“With the right treatment and support, many children with spina bifida survive well into adulthood. It can be a challenging condition to live with, but many adults with spina bifida are able to lead independent and fulfilling lives,” Dr Kitaka says.

Although Wafula has got a free wheelchair to support his movements, his parents say a lot still needs to be done if he is to recover.

“We are not able to do anything for this boy beyond this donated wheelchair. We request whoever can to come and help us get him treated. Hopefully, he will recover and stabilize,” Musindo appeals.

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