Stories

World Hydrocephalus Day 2021

Elijah and Ronald play with a toy car the morning of August 3, as they both await surgery, they both suffer from hydrocephalus.





Today is a global day of remembrance and action.

Each year, roughly half a million people around the world are diagnosed with hydrocephalus, a neurological condition causing abnormally-high levels of fluid in the brain. For children with access to treatment, the chance of leading a normal and productive life is high. However, for children born in low- and middle-income countries (LMIC) where treatment options are limited, the condition is often fatal.

To compound the problem, false or harmful beliefs about visible disabilities such as hydrocephalus persist in many LMICs, especially in Africa. As a result, children living with hydrocephalus often face stigmatization, discrimination, physical violence, and abuse. The parents and caretakers of these children (especially mothers) are also often victims of ridicule, rejection, and marginalization due to their child’s disability. As a consequence of these powerful social factors, children with hydrocephalus are often abandoned or, in extreme cases, killed.

CURE Children’s Hospital of Uganda

The CURE Children’s Hospital of Uganda (CURE Uganda) specializes in delivering expert surgical treatments for life-threatening conditions including hydrocephalus, spina bifida, and others. Since opening in 2000, CURE Uganda has emerged as one of Africa’s leading hospitals for the treatment of pediatric neurological conditions. The internationally recognized hospital sees over 7,000 patients a year and conducts over 1,400 neurosurgeries annually.

CURE Uganda also hosts the prestigious CURE Neuro Fellowship Program that attracts surgeons from around the world, including the United States, to learn cutting-edge techniques. Part of the training program includes the treatment of hydrocephalus using the endoscopic third ventriculostomy and choroid plexus cauterization (ETV/CPC) procedure, a groundbreaking, minimally invasive technique developed by Dr. Benjamin Warf that — critically — does not require the use of a shunt. A shunt is a hollow tube surgically placed in the brain that regulates cerebrospinal fluid movement.

Dr. Mugamba performs an ETV/CPC procedure at CURE Uganda

In LMICs such as Uganda, where emergency medical access in the event of shunt failure is extremely limited, ETV/CPC is an essential, life-saving treatment for hydrocephalus. As Dr. Benjamin Warf noted during a recent US congressional hearing, in the years since he first began his work in Uganda, use of the ETV/CPC procedure is becoming more common in pediatric centers across the world, including in high-income countries.

The adoption in wealthy countries of Dr. Benjamin Warf’s novel technique is an example of how investments in global health eventually benefit us all. Today, on World Hydrocephalus Day, consider joining others around the world in providing hope to children suffering from this treatable disability by donating directly to the CURE Children’s Hospital of Uganda