Concern over growing hydrocephalus threat among Ugandan children

________________

Medical experts say they are concerned over what they are calling the growing threat of hydrocephalus among Ugandan children.

Hydrocephalus is a condition characterised by the accumulation of cerebrospinal fluid in the brain.

According to paediatric neurosurgical hospital CURE Uganda medical director Dr Emmanuel Wegoye, parents should be aware of early signs and symptoms for timely intervention.

“Hydrocephalus constitutes about 70% of the cases that we treat. Annually, we perform approximately 1,300 surgeries for hydrocephalus cases at Cure Children's Hospital in Mbale. Most of the cases of hydrocephalus in Uganda are as a result of neonatal infections, children born in unclean environments,” Wegoye said.

When a child is born in an unclean environment, it increases the risk of infections, and sometimes the brain is not spared, which, among others, affects the flow of cerebrospinal fluid around the child's brain.

“As a result, water accumulates, which compresses their brains and impedes blood flow to it, resulting in loss of brain cells and, eventually, sometimes death in these children,” Wegoye said.

According to the health ministry, hydrocephalus affects over 8,000 people each year, with 40% of the cases being post-infection hydrocephalus, 30% related to spina bifida and congenital hydrocephalus.

Despite the worrying prevalence figure, the Government admits that public awareness and understanding are still a big challenge, resulting in social stigma, discrimination and limited access to services and information. 

Wegoye says hydrocephalus can also be caused by abnormalities that may occur during the formation of children's brains. These abnormalities, Wegoye said, cause about 40% of the children that they treat.

“Another cause is spinal bifida, which is a neural tube defect, resulting in a malformed spinal cord. This also translates into developing hydrocephalus, which constitutes a high volume of cases that we see in Mbale,” Wegoye said.

He added: “Therefore, time is of the essence that these children get timely treatment when they have hydrocephalus, because when you act fast, you protect the brain and preserve it. That's the hallmark of what we do: Protect the brain and preserve any function that is there.”

It is estimated that 11.7% of live births in Uganda, approximately 10,000 births, are affected by these conditions.

Hydrocephalus is an expensive medical condition to treat, costing about shillings 7.5 million to treat a single case.

“But when you go out, it is more than that, it can cost $15,000 (about shillings 53.2 million). All our treatment is donor-supported,” he said.

“We offer donor-sponsored surgeries. So, we go out, like today we are out here at the throwback party, trying to raise money to help one or two children. In the same way, we go to the private sector, organisations in and outside Uganda, to help provide sponsorship for these children,” Wegoye said.

This was during a recent Kampala corporates throwback fundraising dinner at the Serena Kigo to support the cause of Hydrocephalus treatment in the country.

“We have our major fundraiser: The Cure Brain Run. This is happening on October 18, 2025, in Mbale. Our target is to raise about sh1b to support surgeries for the children we treat."

Wegoye told the corporates that the treatment procedures of hydrocephalus include a shuntless procedure called endoscopic third ventriculostomy, where they make a way for the water internally.

“The second method, we place a tube called a shunt that has a valve. We place it in the waterways in the brain and drop it into the tummy, and that is able to drain the water from the child's head,” Wegoye said.

The signs and the symptoms of the disease in the children may include irritability, excessive crying, growing head and sun setting eyes. The black round thing in the eyes points downwards, and the veins of the head become extremely prominent in these children.

Wegoye said the other prominent features of the disease is the brain function loss where children stop laughing, smiling, and walking.

According to medical experts, the problem is most prominent in upcountry or rural areas.

“It's a disease of the poor. However, with the advances in healthcare, we see these neonatal intensive care units coming up around the country. We are seeing an increasing number of children coming from our intensive care units because of kids being born premature and being exposed,” Wegoye said.

Wegoye appealed to parents, caregivers and healthcare professionals to prioritise early detection and treatment.

“By working together, we can reduce the burden of this condition and improve the lives of countless children and families affected by hydrocephalus,” he said.

According to Maria Majimbi, the director Retro Connect Uganda Ltd, they partied for the cause.

This is the first edition, and we decided to twist the party cause a little bit and throw in charity. We are raising money for the Cure Children’s Hospital Mbale, and the cause we are fronting is Hydrocephalus,” Majimbi said.

She added; “Why we came in to push this cause is because one of our directors is a patron in the fight against hydrocephalus. We thought what we should give to the people that we really haven’t given. We looked for the cause that still has a lot of stigma and people do not know about.”

Majimbi said some people think that these children have been bewitched and their mothers were bewitched to give birth to children with such a condition, which is not true.

“As a result, these women are extremely needy and lonely. That’s how we said let us come and party for a cause,” she said.

Phionah Awava, partner director at Retro Connect Uganda, said their contribution to the cause was limitless.

“The hospital entirely depends on charity, can you imagine last year alone they carried out 2010 surgeries. Therefore, because of such huge commitment, the donations are limitless,” Awava said.

The fundraising drive kicked-off with a golf-social event in the morning before hosting all the golfers for a buffer meal in the evening.