Home Features The social stigma attached to hydrocephalus in Kenya

The social stigma attached to hydrocephalus in Kenya


Jane Okwiri, 14 years, was born normal like any other child. It is until the age of four years that her parents began to notice something unusual in her.

Her head began growing and its size kept on increasing which kept them worried; she was not eating well, had difficulty in walking gait, had double vision and was suffering from restlessness.

Agnes Okwiri, her mother noticed the troubles her four-year daughter was going through and quickly rushed her to Kenyatta National Hospital, where she was diagnosed with hydrocephalus.

According to the National Institute of Neurological Disorders and Stroke (NINDS), “the term hydrocephalus is derived from the Greek words “hydro” meaning water and “cephalus” meaning head.

As the name implies, it is a condition in which the primary characteristic is an excessive accumulation of fluid in the brain.”

NINDS adds that symptoms of hydrocephalus vary with age, disease progression, and individual differences in tolerance to the condition.

Head Circumference

In infancy, the most obvious indication of hydrocephalus is often a rapid increase in head circumference or an unusually large head size.

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Other symptoms may include vomiting, sleepiness, irritability, downward deviation of the eyes (also called “sunsetting”), and seizures.

Older children and adults may experience different symptoms and their symptoms may include a headache followed by vomiting, nausea, blurred or double vision, sunsetting of the eyes, problems with balance, poor coordination, gait disturbance, urinary incontinence, slowing or loss of developmental progress, lethargy, drowsiness, irritability, or other changes in personality or cognition including memory loss.

Kenyan statistics

In Kenya, 1 to 2 out of every 1000 births are born with hydrocephalus and the majority of infants lack treatment as they are subjected to myths of the social genetical problem.

Others miss treatment because it is very expensive.

Dr. Maulid Yussuf, a general practitioner says that one of the most effective management is surgical intervention though medical treatments are available.

“A shunt is inserted into the brain, which diverts the flow of the cerebrospinal fluid of the central nervous system to another area of the body where it can be absorbed as part of the normal circulatory system, “says Dr. Yussuf

He further adds, “The installation requires lifelong monitoring by the recipient, because hydrocephalus may re-occur due to obstruction or failure of the shunt”


NINDS maintains that shunt systems are imperfect devices. Complications may include mechanical failure, infections, obstructions, and the need to lengthen or replace the catheter.

Generally, shunt systems require monitoring and regular medical follow-up. When complications occur, subsequent surgery to replace the failed part or the entire shunt system may be needed.

Jane is happy and thanks to God for the successful surgery which changed her life for the better.

“I can now walk well, play like any other child without feeling neglected by my friends. In the future, I would like to be a doctor so as to treat people with the same disease”.

Josephat Okello, a student at the Onyinjo Primary School was also born with the disorder. His case was detected early as an infant and he was put into medication and underwent surgery.

However, he did not know that he suffered from hydrocephalus as the operation was carried out when he was nine months old. One afternoon, as he was studying in school, he started experiencing double vision, sweating, and dizziness.

He fell on his deskmate Mary, who was shocked and terrified in equal measures, she moved quickly away from Josephat.

Oozing mouth

Unfortunately, he hit his head on the floor and foam began oozing from his mouth.

The students scream for help from the teachers, who quickly rushed him to the hospital.

Josephat’s situation is a type of recurrent hydrocephalus.

Dr. Yussuf, says that it is not strange, recurrent hydrocephalus occurs because as one grows, after the operation, the head may increase normally, but not the shunt and therefore there may be a loose connection in the shunt; hence recurrence.

“This situation can be treated temporarily with drugs to reduce the pressure of the cerebrospinal fluid; if it worsens, then the patient may undergo another surgery “adds Dr. Owili

For Josephat, the drugs administered to him worked and he is still under observation by the doctors.


It was until this incident that Josephat was told about his condition and the surgery he underwent while an infant. He underwent counseling from both his parents and doctors so as to accept his condition.

“Hydrocephalus has been just like any other disease, the society should not look at those with the disorder as abnormal because of the big head, “says Josephat

The challenge of treating hydrocephalus in Kenya is the cost. It is very expensive and only a few can afford it, forcing others to leave their grow with the condition.

Some who can afford often prefer to go abroad for treatments. In Kenya, Kenyatta National Hospital and BethanyKids Children’s Hospital Kijabe (Kenya) operate children with hydrocephalus.

The Ministry of health should come out and save many children who are suffering from this disease.