Hydrocephalus: why care needs to change

17 08 2011

Over the last two years Joint Council staff has met many children throughout the world affected by Hydrocephalus, a debilitating and sometimes fatal special need.  In our travels and work we’ve met Addison from Kyrgyzstan who has succumbed to the disease; Rene in Haiti; Josh in South Africa; and most recently Sun Cheng in China.  All of these children were orphaned because their biological family was unable to care for their disease. All of these children will most likely meet an early death due to their disease.  Many of them will pass slowly and alone.

On Tuesday, August 2nd Joint Council staff attended a Congressional Hearing at Subcommittee on Africa, Global Health and Human Rights focused on Hydrocephalus.  Hydrocephalus is the excessive accumulation of fluid on the brain and because of the pressure of the excess fluid, if it is left untreated it can cause brain damage and in many cases death.  The need for improved solutions to Hydrocephalus is imperative in our world today; with 1 out of every 2,000 children in the developing world being affected and more than 400,000 new cases of Hydrocephalus in Africa last year alone.

The most common strategy for treating the disease is placing a shunt, a tube implanted from the brain to abdomen, to drain fluid from the brain to the abdominal cavity. However, typically a shunt will need to be replaced up to five times in a child’s lifetime.  Oftentimes, due lack of resources, transportation difficulties, lack of accessible healthcare and various other factors, children often pass within the time it takes to get to a hospital to have the shunt fixed.  Clearly, another solution is needed.

The three Congressional Hearing panelists; Dr. Benjamin Warf, Dr. Steven Schiff, and Jim Cohick, have developed a groundbreaking surgery that has saved countless lives in Uganda. The new surgery uses an endoscopic treatment paired with an ETV/CPC procedure that reduces the tissue which creates the excess fluid. Although the research is limited thus far, the new treatment has a 75% success rate and the need for a shunt has been eliminated.

The panelists provided several recommendations to the international health community to reduce the number of cases of Hydrocephalus and promote sustainable strategies to treat the disease. They include strengthening health systems training, empowering local surgeons to treat children with Hydrocephalus, facilitating research to find the best practices to prevent post infection, and passionate care and concern. The panelists also spoke of the need for more neurosurgeons in developing countries, most specially Africa; in the United States there are 3500 neurosurgeons, in Uganda there are four, and in Congo there is only one. These staggering facts, and the children lost each day due to the disease, should motivate the international public health community to not only educate themselves about Hydrocephalus but also begin to provide resources so that more children can be saved and given a chance to live and thrive in a family.

For more information regarding the Congressional Hearing and the needs for better treatment options please to go:

http://cure.org/blog/2011/08/cure-testifies-on-hydrocephalus-treatment/








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