Hope in early treatment: How Uganda is leading fight against hydrocephalus

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When baby Grace (not real name) was born in Mbale, her parents immediately noticed that her head was larger than usual. At just three weeks, her cries were constant, and she struggled to feed. Doctors at Cure Children’s Hospital in Mbale city later confirmed what her family feared: Grace had hydrocephalus, a condition caused by excessive accumulation of fluid in the brain.

“Hydrocephalus is one of the most common conditions we see among children,” CURE's Dr Emmanuel Okello says. “But with early detection and timely treatment, these children can live healthy, fulfilling lives.”

Hydrocephalus affects an estimated one in every 500 children globally, according to international studies. In sub-Saharan Africa, the burden is even higher, partly due to limited access to maternal healthcare and high rates of neonatal infections. Uganda alone records about 1,500 to 2,500 new cases every year, making it one of the leading countries in paediatric hydrocephalus surgeries worldwide.

For decades, the standard treatment has been the surgical placement of a shunt, a thin tube that drains fluid from the brain into the abdomen. This simple but lifesaving procedure has restored hope to thousands of families. Yet shunts come with challenges. According to Okello, they can fail, get blocked, or cause infections, meaning a child may need multiple surgeries over a lifetime.

Cynthia Baitwa, patron of the Hydrocephalus and Spina Bifida Association of Uganda, with some of the children during celebrations to mark the day of Hydrocephalus and spina bifida in Entebbe on Sept. 23, 2025. (Photo by Nicholas Oneal)

In recent years, a new procedure known as endoscopic third ventriculostomy (ETV) has transformed treatment options. Using a tiny camera inserted through a small opening in the skull, surgeons create a natural pathway for fluid to circulate, avoiding the need for a permanent shunt.

“ETV is particularly beneficial because it frees the child from lifelong dependency on a device,” Dr Okello explains. “But it doesn’t work for everyone; each child’s case has to be carefully assessed.”

While celebrating World Hydrocephalus and Spina Bifida Day at Entebbe Zoo in Entebbe municipality, Wakiso district, on Tuesday, September 23, 2025. The event was organised by the Rotary Club of Muyenga Breeza.

Okello said that early detection remains the most powerful weapon against the condition. He explained that during pregnancy, routine ultrasounds can reveal enlarged head sizes or fluid buildup, giving doctors and families time to prepare.

“If detected early, delivery can be planned safely, often through caesarean section, and immediate referral can be arranged for surgery,” he said.

Efforts to equip hospitals

The Government has stepped up efforts by equipping hospitals with ultrasound machines and training health workers to identify congenital hydrocephalus early. Still, challenges remain. In rural areas, many mothers attend their first antenatal visit late or deliver at home, delaying diagnosis and treatment. By the time some babies reach specialised centres, their heads are so enlarged that surgery becomes riskier.

Currently, only three major hospitals in Uganda, Mulago National Referral Hospital in Kampala, Mbarara Regional Referral Hospital, and CURE Children’s Hospital in Mbale, offer specialised hydrocephalus surgeries. Among them, CURE Hospital performs more than 2,000 surgeries annually, making it one of the busiest paediatric neurosurgical centres in the world.

“Mulago Hospital is more equipped, but we (Cure Children’s Hospital Mbale) get more referrals from Mulago, we need more hospitals if we are to treat hydrocephalus,” he said.

Behind the statistics are real families, many of whom travel long distances, carrying their babies on buses, motorcycles, or even on foot, in search of care. For parents like Grace’s, the journey is filled with uncertainty but also hope.

“Every child deserves a chance,” Okello emphasised. “Hydrocephalus is not the end of the story. With the right treatment, these children can go to school, play, and live like any other.”

Awareness is key

Elias Edu, the managing director of National Insurance Company (NIC), said there is a need to push for more awareness, stronger antenatal care, and timely referrals. He noted that each successful surgery is not just a medical triumph but a second chance at life for a child and a renewed hope for their family.

He challenged societies to help families with such children and avoid stigmatising them, noting that this could be the only way to uplift them.

Edu through NIC donated shillings five million to look after the children with conditions who are currently looked after at the Katabi rehabilitation centre.

Cynthia Baitwa, a former president of the Muyenga Breeze Rotary Club, called for more support towards the mothers of such children. She said the majority of them are single mothers, and they are battling with insufficient care.

She is now anticipating starting a fundraising campaign, which will see the affected children with a care centre where all necessary support will find them.

Currently, a group of about 20 mothers, meaning 20 children, are renting a place in Katabi, which is costly to mothers who do not work. Baitwa said, "Once the centre is built, it will at least accommodate over 50 people."