Over 2,500 new hydrocephalus cases 'reported each year'

By Gladys Kalibbala

Shaffix Mukisa, aged two years, developed signs of a swelling head in the first week after being born at a local health centre in Galiraaya, Kayunga district.

His mother, Yozefina Kirabira, at first took the matter lightly, even after being advised to take the child to Mulago Hospital. She explains that because of lack of transport fare to Kampala, a herbalist in the neighbourhood took on the treatment of the baby.

“He used to press the baby’s head with the herbs he had boiled but instead it kept on swelling as the baby grew,” she explains.

The toddler (pictured right with his mother) was later found to be suffering from hydrocephalus and has just been operated on. Yet Mukisa’s case is just one in several other such cases across the country.

 Health reports indicate that hydrocephalus among infants is on the rise in Uganda where it is estimated that over 2,500 new cases are reported each year.

The Executive Director for CURE hospital in Mbale, Johnson Derek, says more than 6,000 Ugandan children are born with or develop a neurological disability each year.

Fortunately CURE hospital – in the eastern part of the country – can provide treatment to such cases if presented early enough.

“Majority of these children simply need one or two medical interventions to effectively treat their conditions and permanently improve their quality of life,” he explains.

While receiving a donation of US$2,750 from Spedag Interfrieght Uganda last week at Katalemwa Cheshire Home, Derek noted that a few parents are able to pay for the much-needed operations at CURE hospital.

From this, he appealed to government and corporate bodies to respond to this noble cause.

Challenges

Derek says in many cases where it’s commonly said ‘they [babies reportedly suffering from hydrocephalus] have water on the brain’ as they develop big heads, fathers abandon them due to their conditions.

He warns that the condition may turn fatal especially when the operation does not occur, especially when the child is left to reach two years old with the condition.

Only a few families can afford the subsidized sh750,000 from the average surgery cost of US$1,750 (about sh4.5m), leaving many children to die miserably.

But that’s not a spell of total lost hope. CURE hospital has designed a way of assessing each family on their ability to pay.

“As we continue to solicit funds from corporate bodies, we also work out affordable installment plans for these families,” Derek reveals.

Lifetime care

Concepta Naluyima, the chairperson for Spina Bifida & Hydrocephalus Association-Uganda, explains that the disease needs lifetime care.

“Once a parent is lazy and fails to observe what doctors have asked them to do, the success story may not be complete,” she explains.

According to her, many children who have been successfully operated on deteriorate upon return to their homes due to harsh conditions and poor environment.

So Naluyima’s call is for more sensitization programs to be carried out among parents as well as improvement on patient follow-ups.