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Seated near the door carrying a baby on her lap, Kate Musiime was deep in thought over her baby's swollen head.

Musiime gave birth to her second baby at Mulago National Referral Hospital a year ago. However, a month later, the baby’s head started swelling.

Fingers crossed, carrying a bag of worries, Musiime walked to the hospital to find out what the problem was. She was told that the baby was suffering from hydrocephalus. The young mother was ignorant about the disease. Musiime is among the hundreds of mothers who are unaware of the causes of the condition.

“I had never experienced this; my firstborn is very fine. So, when I saw this one’s swelling, I was confused,” she said.

Hydrocephalus, according to Mayo Clinic is the buildup of fluid in cavities called ventricles deep within the brain. The excess fluid increases the size of the ventricles and puts pressure on the brain. Cerebrospinal fluid usually flows through the ventricles and bathes the brain and spinal column.

It's most common in infants and older adults. It is also characterised by head enlargement in infants, adults, and older children who experience headache, impaired vision, cognitive difficulties, loss of co-ordination, and incontinence.

(Photo by Godiver Asege)

Rotarians of Kampala Muyenga Breeze say this is a disease that is slowly de-framing the lives of children at the expense of parents' ignorance.

The club visited the hydrocephalus and Spina Bifida initiative centre that keeps over 70 children at Katabi town council, Entebbe in Wakiso district on Friday, March 29, 2024.

Rotarians observed that most people in communities are unaware of the causes and how to prevent the disease. This is the reason they are embarking on community sensitisation.

Club president Paul Kigonya said most parents with the disease attribute it to witchcraft, and some hardly bring their children to light for help.

According to him, even when they have made big strides toward partnering with Cure Hospital Mbale, the only specialised hospital in Uganda, only informed parents show up.

“Most parents hide their children till they die, yet the disease can be prevented. So, as Rotarians, we are going to venture into massive sensitisation so that everyone gets to know the causes and prevention,” he said.

This time, the president said they would be traversing the country, informing people, and also getting the attention of the Government to follow suit.

Cynthia Baitwa, the past president of the club, said the disease has claimed the lives of many children, yet with combined efforts, it has come to an end.

“We are on a good mission to help people get out of the problem,” she said.

As the norm of the Rotary service beyond self, Baitwa said many people have been sensitised to fight against cancer and malaria through annual runs. The message has sunk into communities, and they know what to do, she said.

She added that if a special annual event starts about fighting against Spina Bifida and hydrocephalus, many people will take part, and with time, it will be no more.

Last year in Mbale city, Doctor Timothy Erikson, the executive director of Cure Hospital, said 5,000 to 7,000 babies are born with spina bifida and hydrocephalus, but only 1,800 (20%) get treatment every year, which remains a challenge since a huge number is not operated on (over 4,200).

Erickson revealed that many die because they have no access to medical care. This normally happens for one to three months. He attributed the challenge to parents who still believe in witches and curses.

Patience Mbabazi, a mother with the affected child, said her baby developed complications after a month; however, she was quick to know the cause and find treatment. The child did not get healed completely but improved and is not like others.

According to Mbabazi, many people are afraid of stigma and appreciate the efforts of Rotarians towards the fight against the disease through community campaigns.

She asked the Government to build more rehabilitation centers and invest in providing drugs for the sick.

Researchers from medical life sciences found out that East Africa had become a hotbed for pediatric hydrocephalus for mysteriously unknown reasons, with an estimated over 4,000 new cases in Uganda alone each year.

The research further revealed that most of the children often die if parents delay seeking medical attention.