Gulu

The children with what is now commonly known as “water head” or hydrocephalus are increasing in Gulu district and so too are words such as ‘misfortune’ or “mango heads” which are all nicknames given to them.

Ms Filder Akwongo of Palaro Rajab village in Laliya parish Bungatira sub-county in Gulu district says that she bore Ojok Kenneth not knowing he would be deformed. Today she accuses her neighbors of insulting and beating up her son.

 

“Whenever he moves in the neighborhood, fellow children insult him as ugly, and they push on the floor with the intention of injuring him,” she said.

 

Akwongo said she could not report this matter to community leaders because she fears they would demand a lot of consultation and facilitation fee which she lacks, so her grievances remain unheard.Ms Akwongo told Acholi Times that elderly people keep telling her to keep Ojok out of social life because he embarrasses them.

 

“Once my son sits for long time his legs get swollen, so why should his rights to movement be infringed?” she asked.

 

Ms Winifred Acirocan, a resident of Laliya Owor village says that she identifies with what Akwongo is saying because her daughter suffers from the same illness.

 

She said these abuses normally come from her mother in-law who accuses her of delivering a misfortune in their family and community, and thus her daughter should die.

 

“She grabs my land and calls my daughter an evil spirit in the family,” she said “I feel sad and always ask God why he has given me this misfortune,” Acirocan the mother of Oroma Piroty wondered.

 

Most families with this condition in one way or another have attempted traditional methods of treatment as they cannot afford the conventional way of healing hydrocephalous.

 

Acirocan’s mother in law Mrs Cijeria Anyango believes that in a family where a twin is born but pass on, their spirits usually disturbs the one left behind, sometimes bringing diseases of different kind but mostly strange ones like hydrocephalous.

 

“This is Opio who died long time ago but we did not perform rituals to appease him, he is now resurrecting in the form of another human being, that is why s has a big head,” Cijeria Anyango mother in-law said.

 

But to Acirocan, her child could have been infected with Malaria in the early stages of her life but did not receive adequate treatment leading up to water head.

 

“Am torn between the river, if I disobey the in-laws local believes they will hate me, but to me I think it’s not associated with evil spirit; there is no more giving birth here, even whether it means divorce,” Acirocan said.

 

According to the Manager of the Orthopaedic Department at Gulu referral Hospital Mr Kalianzi Emmanuel, hydrocephalous is not caused by evil spirits or associated with it.

 

“These are women who did not take folic acid during antenatal care and delayed to come for it thus developing water head, it’s nothing to do with evil spirits” he said.

 

He said whenever parents see a child developing a big head, they should seek medical assistance, because travel bills and pay cost of treatment at subsidized rate is available under the AVSI programme.

 

According to sources in the department, the pipe used to drain the accumulated water from the skull of a child costs up to shs3million and which the parents can hardly afford.

 

The International Foundation for Hydrocephalous (IF) through Italian NGO AVSI have been carrying out awareness campaigns about the condition in villages since 2009 and over 1000 children have so far been registered with an expected increase in the number.

 

Hydrocephalus also sometime known as “Water on the Brain,” is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid in the ventricles of the brain.

 

This may cause increase intracranial pressure inside the skull and progressive enlargement of the head, convulsion, tunnel vision, and mental disability. Hydrocephalus can also cause death.

 

Hydrocephalus in infants in developing countries is a grand medical mystery," said Steven Schiff, the Brush Chair professor of engineering and director, Penn State Centre for Neural Engineering according to journal of Neurosurgery: paediatrics.

 

How to treat Hydrocephalus

 

Treatment includes placing a shunt to drain the fluid, but inevitably these shunts become plugged and require emergency care, not always available in rural Africa and other resource-limited regions.

 

Surgeons vigorously explore the use of new brain endoscopes to divert fluid build-up internally in such children, but this approach addresses the fluid and does not fix previous infection or damage to the brain.

"Brains of children with hydrocephalus can be completely or mostly destroyed either by the scarring from the disease or by the pressure of the cerebrospinal fluid that cannot escape," said Schiff.

 

"Many of these children with the worst after-effects of infection will be mentally deficient and survive only as long as their mothers can adequately care for them.

 

Amony Irene, of Pece Pawel in Gulu Municipality said most children who went under surgery in Mbale clinic died except her son and another she knows.

 

“When your child is taken for surgery its between life and death, always think of the end of the road,” Amony said.

 

The clinic is not free either. Amony told Acholi Times that the authorities required everyone to pay US Dollars25 for every visit for them to work on their children.

 

“Nothing is free in this Uganda, they just deceive donors, yet they require every parent to pay US Dollars 300 for treatment and this has denied many children access to cure and survival,” she said.

 

Hydrocephalus in infants in sub-Saharan Africa is thought to be caused most often by meningitis-type infections during the first month of life.

 

The U.S. and Ugandan researchers looked at the fluid from the brains of three sets of 25 consecutive infant hydrocephalus patients during January, July and October to try to determine the cause of the disease.

 

By the time parents bring infants with rapidly growing heads to the CURE Children's Hospital in Mbale, Uganda, the underlying infection is gone.

 

Their findings showed that 94 percent of the samples contained bacterial remnants which most likely are the major cause to Hydrocephalus in children. Some sequences that appeared in the DNA analysis were of unknown bacteria yet to be identified.

 

Historically, certain East African communities have applied cow dung to stem bleeding in umbilical cord stumps, which causes infections in newborns. Although such infections are now rare, the scope of newborn bacterial infections related to living in close proximity to domestic animals remains poorly categorized.

 

"As far as we can tell, these types of environmental newborn infections are the dominant cause of hydrocephalus on the planet," said Schiff. "We may be dealing with bacteria that we can't culture, viruses or parasites, and we may be dealing with different organisms in different locations"