The CURE Children’s Hospital of Uganda is creating modern-day miracles. CURE neurosurgeons have implemented a new medical procedure that cures children with hydrocephalus, a condition that causes intellectual, physical and neurological disabilities due to a buildup of fluid on the brain. When left untreated, the mortality rate of hydrocephalus is high, a statistic that CURE Uganda aims to defeat.

We recently caught up with CURE Uganda’s VP of Donor Relations, Lisa Wolf as she was preparing to visit the CURE Children’s Hospital in Uganda.

Hydrocephalus falls into a deeper cultural context in Uganda and throughout Sub-Saharan Africa. Many people believe the condition is a curse or caused by witchcraft. How does CURE Uganda remove these superstitions in order to reach the children that need help?

Wolf: CURE Uganda staff provides medical expertise through proper education and training – from surgeons to OR tech to nurse to patient aid to imaging technician to lab assistant – and commitment holistic healing expressed in compassionate care. CURE International is a ministry, which believes in the combined effectiveness of physical and spiritual healing, because hope is needed for the future. When it is expressed to us that a child with hydrocephalus deserves to die or be outcast, we support and encourage the parents facing these community pressures with what we understand to be the causes, what we can do to address those, and what the future possibly holds for that child and their family. When possible and invited, our staff meets with community leaders to help increase awareness of this condition and where help can be received. Lastly, parents who thought they were the only ones facing these issues find comfort, strength and support from other parents they meet at CURE Uganda.

It is estimated that 60 percent of Ugandan hydrocephalus cases are caused by infection during the first month of an infant’s life. What changes from pregnancy to infancy that could cause such a vigorous infection?

Wolf: Most children in Uganda are born outside of a hospital, often with the aid of a traditional birth attendant (TBA). The practices of these TBA’s are what lead to many of these post-natal infections. For example, it is a common practice to use of a mixture of cow dung and mud to stop bleeding from the umbilical cord or worse to cover an open wound caused by spina bifida. This creates a conduit for raging infections that can result in meningitis in the brain and lead to hydrocephalus. Dr. [Steven] Schiff has done studies, which show that “healthy” Ugandans who have never experienced an infection have pathogens within their blood that can be attributed to the use of the cow dung and mud solution at birth.

In a recent testimony before the U.S. Congressional Subcommittee on Global Health, Dr. Schiff, director of the Center for Neural Engineering, said “We will never operate our way out of this problem.” Would you agree?

Wolf: In time, the efforts of Dr. Schiff and others to research and develop strategies to prevent the infection, which causes hydrocephalus, will help reduce the number of cases. Until that occurs – and even for some time after – there is a great need for surgical treatment. Across the developing world, there are approximately 400,000 new cases of hydrocephalus. Nearly 80 percent of these children have little or no access to the care they need. Without treatment, the majority die before they reach five years of age. The goal of CURE Hydrocephalus is to train throughout the developing world to make care available to as many children as possible. 

It has been estimated that in Uganda, one neurosurgeon exists for every 10 million people. How many children with hydrocephalus receive the help they need?

Wolf: We estimate that there are approximately 2,000 new cases of hydrocephalus in Uganda each year. CURE Uganda treats approximately 800 children with hydrocephalus each year, so less than 50 percent are currently receiving the care they need. This is why the need for training additional surgeons is so great. Without more surgeons capable of providing quality treatment for hydrocephalus, children will continue to die.

It is important to note that as of Sept. 30, 2011, CURE Uganda has provided 3,941 children with life-saving surgeries to treat hydrocephalus. This is more than any other hospital in the world.  In addition, through CURE Hydrocephalus’s surgeon training program, CURE Uganda is training surgeons who serve in other underserved parts of the world in these life-saving techniques. Two of the surgeons trained serve within the CURE International network of hospitals in Uganda and Zambia.

Dr. Benjamin Warf’s new procedure has been called a cure for hydrocephalus. How does the new treatment – that of a fiber optic endoscope and tissue cauterization – surpass the use of a shunt? Are there instances where hydrocephalus reoccurs?

Wolf: The use of a shunt has inherent risk, which includes the need for it to be replaced due to malfunction. A child often requires a shunt replacement an average of 4-5 times prior to her eighteenth birthday. When expertise is available, this is a workable scenario. But in many places, expertise is not available, and the matter becomes a life-threatening situation. The endoscopic procedure – endoscopic third ventriculostomy combined with choroid plexus cauterization or ETV/CPC – creates a pathway through the third ventricle at the base of the skull. Dr. Warf’s published findings in peer-reviewed journals reflect high success rates and low risk of recurrence.

What can the typical American do to help support the efforts of CURE Uganda’s Hydrocephalus initiative?

Wolf: Few Americans know about hydrocephalus or are aware of how large a problem it is throughout the developing world. Through CURE Hydrocephalus, we hope to raise awareness of the condition and raise funds to make treatment available in as many countries as possible.   With additional resources, thousands of young lives can be saved.  At a CURE hospital, the cost of surgery to treat hydrocephalus and save a child’s life is only $1,750. We want to encourage people to join together to pay for the cost of surgery and to spread the word about our work.

We have launched a new website at http://cure.org/hydrocephalus/ to share information with potential supporter and doctors as well as the latest news about CURE Hydrocephalus and its efforts.

-Li St. Micheal

More on Hydrocephalus on HalogenTV.com:

• Hydrocephalus: Eliot’s Story