Findings show that about 4800 hydrocephalus children are born every year in the country but due to unknown reasons only 350 go to hospital.
‘Mama Sitla’ as she preferred to be called, is one of the parents with hydrocephalus child at Muhimbili Hospital. Her child was born a year ago in Likong’o village, Lindi Region.
A 21-years-old mother explains how surprised and sad she was after realizing that her daughter developed Hydrocephalus disease three months after her birth.
“I was very surprised and sad after realizing that my daughter developed a disease called Hydrocephalus because she was born healthy like some other infant,” Mama Silta says.
In an exclusive interviewed with this paper, Mama Sitla said her child was born in a normal condition; they lived happily before the current situation. Adding that her child was born a healthy baby girl weighed 3.4 pounds.
“We started seeing changes on her head. We decided to consult a doctor at Sokoine Hospital, Lindi town. A doctor attended her told us that she has a problem which according to him the hospital (Sokoine Hospital) could not manage to cure her,” she explained.
Six months later of no success, Sokoine Hospital medical team refers Mama Sitla to Muhimbili National Hospital (MNH) in Dar es Salaam for further treatment.
“I came here two weeks ago escorted by a doctor from Sokoine Hospital.
They arranged my arrival and everything about me and my daughter are in their control,” she told this paper. However until Mama Silta interviewed by this paper, the specialist doctors at MNH have not yet started to conduct surgery of her daughter because at that time she had little blood in her body for that service.
“Doctors said my daughter had little blood for them to conduct surgery on her. We are still waiting what will be next after blood,” she said.
According to the MNH, Hydrocephalus department has more than 60 patients with the same case.
What is hydrocephalus?
It is the excess fluid in the brain which causes much pressure to the extent of damaging brain tissues. In humans, it happens when the Neuro Tube Defect fails to develop properly after three weeks of pregnancy that causes poor production of brain. As a result the empty areas are filled with water. Because bones of a child in the skulls are not yet joined hence their heads gets bigger.
Hydrocephalus can happen to both infants and adults. Malnutrition and lack of folic acid in the food to the mothers are the main reasons why children are born with hydrocephalus.
Other reasons includes: flue, umbilical cord which is not well treated, impure urine where altogether causes bacteria to spread in infants’ bodies.
Fortunately, the disease is curable and kids can completely recover if are brought to the hospital early.
However, the disease is more dangerous in adults because they don’t experience water filling in their heads; rather the brain gets pressurized until it dies. If an adult survives from hydrocephalus, they are more likely to die or at least lose mind control.
Muhimbili Orthopaedic Institute (MOI) has only five Neurosurgeon experts who operate in the whole country. Up to 350 hydrocephalus cases per year are being brought at MOI where many of them are from Morogoro, Mtwara, Mwanza and Zanzibar regions.
A hydrocephalus child can be examined by two ways; one is putting Ventriculoperitoneal shunt (VP shunt) in the head that absorbs the excess water (which is rich in nutrition) from the brain to the stomach, before it gets to blood system.
The shunt can be changed once in every six months whenever there is a problem, but the department experience difficult moment due to the fact that only 30 percent of patients come back for check up and replacement.
Another popular means of treating a problem is by placing endoscopic third ventriculostomy (etv) in the brain. The purpose of this tool is to create a new path for the fluid, the process that takes one hour.
Speaking to this paper, the MOI Public Relations Officer Doctor Hamisi Shaban who is one of the five experts says the current situation regarding hydrocephalus has forced his department to put more efforts to strengthen the services in the country by ensuring they reach every patient.
He said they are faced with so many challenges but mainly being the low budget for surgery tools. One tube costs USD150 and one child needs at least three of them per year. However, he said due to different sponsorships they have been receiving from local and foreign sponsors such as Cure International, Saudi Arabia Embassy, Belgium and African Barrick Gold, MOI has managed to keep the best services not only at Muhimbili but they also managed to establish an outreach programme at Bugando Hospital in Mwanza.
“Early April, we succeeded to send three doctors to Bugando Hospital, who cured 58 patients for five days,” he said.
Furthermore, Dr Shaban added that the poor follow up from parents’ patients is the core challenge at MOI.
70 percent of treated patients never come back for re-check-up, hence causes the loss of hydrocephalus record each year.
This is caused by lack of centres and programs that are able to reach far places persuade and train the parents on the importance of attending medical centres
“We don’t see them after discharge. We fail to understand how are they doing or whether they are still alive or not, it is a problem,” lamented Dr Shaban.
Yet MOI has no idea what happens to 4450 hydrocephalus patients in the whole country each year.
“We have so far reached a satisfying point; parents association called as Association of Spina and Hydrocephalus in Tanzania Bifid (ASBAHT) has set up the ways to reach them wherever they are and make sure they attend the hospitals after every six months.
For his part, MOI Executive Director Professor Lawrence Museru has urged parents and society in general to stop stigmatisation at homes. Many cases are reported to happen because the parents are too young to understand children’s and women’s issues in general.
“In most cases parents of these children are young mothers, who because of the children’s appearance and them to be ashamed to community, they decide to hide them at home. When arrive here for treatment children are already in bad condition, so most of them die,” said Museru.
The most remarkable hydrocephalus case ever to happen in the world so far is the one involved an Indian child Roona Begum who has successful recovered.
CNN reported that after five surgeries, Roona's head is now down to a circumference of 58 centimetres from the circumference of 94 centimetres, almost triple the size of a normal baby.
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