Research and treatments for hydrocephalus developed by an American doctor working in Uganda that could benefit children around the world were the topics at a congressional hearing held Tuesday before of the House Subcommittee on Africa, Global Health, and Human Rights chaired by Congressman Chris Smith (NJ-04).

    “Hydrocephalus Treatment in Uganda: Leading the Way to Help Children” featured testimony on an innovative new treatment for hydrocephalus developed in Africa, and its potential application for babies born with hydrocephalus in the U.S. The hearing was videoed by CSPAN, and can be watched by clicking here.

    “This hearing is on a serious–and seriously neglected—health condition, and a relatively inexpensive, technologically-sophisticated advancement for curing it, created, designed and perfected by one of our distinguished witnesses, Dr. Benjamin Warf,” Smith said. “Dr. Warf was the first to identify neonatal infection as the chief cause of pediatric hydrocephalus in a developing country. He also developed the new surgical technique which holds great promise not only for the children of Africa but potentially for children in developed countries as well.” Click here to read Chairman Smith’s opening statement.

    In the U.S. hydrocephalus is more common than Down’s syndrome or deafness, affecting 700,000 Americans.  In the developed world, the prevalence is estimated to be about 1 in every 2,000 live births (1 in 500 births in the U.S). Globally, the incidence of neonatal hydrocephalus is estimated to be about 3-5 cases per 1,000 live births. Hydrocephalus is a condition in which function of cerebrospinal fluid in the brain is impaired, most commonly identified at birth. Pressure on the brain causes headaches, vomiting, cognitive problems, balance problems, convulsions, brain damage, and ultimately, death. It can be caused by an infection in the mother during pregnancy, or from a birth defect, such as spina bifida. Smith is the co-chairman of the Spina Bifida Caucus in the House.

    When asked by Smith how the groundbreaking procedure is being received in the U.S., Warf said it has become the preferred primary treatment for infant hydrocephalus at Children’s Hospital in Boston, and was spreading to others in the medical community, as well. For children with spina bifida, two-thirds of whom have hydrocephalus, the success rate is approaching 75 percent, similar to the rates seen in Uganda. 

    “There are others that have begun to use the technique,” Warf said. “I think the main shift in culture has been away from simply placing a shunt in a baby to thinking this could be avoided by a bit more sophisticated of a technique that takes some different skills. But it’s very often worth doing.”

    Around the world, the standard treatment of an implanted shunt (tube-like device) is limited due to the cost, need of continued treatment and the lack of medical facilities. The combination of these factors results in hundreds of thousands of preventable deaths.

    At Children’s Hospital in Boston, Dr. Warf  developed an innovative surgical technique that has successfully decreased the number of hydrocephalus deaths in Uganda where he performed neurosurgeries for 10 years on thousands of children. The operation combines endoscopic third ventriculostomy (ETV), which makes a new pathway for the fluid to escape the cavities of the brain, and endoscopic choroid plexus cauterization (CPC) which cauterizes the tissue that makes the fluid thereby reducing its rate of production, Warf said. The cost is comparable to treatment in the region for common conditions like malignancies, congenital anomalies, cataracts and glaucoma.  He has taught many local doctors the latest neurosurgical techniques. The minimally invasive procedure avoids the need for shunts in most children. Thus far, more than half of infants who receive the surgery are successfully treated without requiring continued treatment. 

    “We developed a novel way to treat hydrocephalus using a scope that avoided shunt dependence in more than half of these babies overall, including those with post-infectious hydrocephalus,” said Dr. Warf (click here to read testimony), M.D., Director of the Neonatal and Congenital Anomalies Neurosurgery in the Department of Neurosurgery at Children's Hospital Boston (biography). 

    Jim Cohick, (click here to read testimony), Senior Vice President of Specialty Programs at CURE International (biography), said the majority of hydrocephalus cases treated at CURE hospitals involve the novel combination of two surgical procedures—ETV/CPC—developed in Uganda by Dr. Warf. 

    “The ETV/CPC technique truly is a cure for children suffering from hydrocephalus as it eliminates the need for a shunt in the brain – the standard hydrocephalus treatment, which must be replaced 3-5 times over a child’s lifetime,” Cohick said.  “As you can imagine, this is a huge logistical and economic challenge in developing world locations, like Uganda.  Too many children with hydrocephalus are never treated and die, and many treated with a shunt live only a short time before their shunt fails and their families are unable to access further medical care.”

    Steven J. Schiff, (click here to read testimony), M.D., Director, Center for Neural Engineering, Pennsylvania State University, (biography), said what was learned in Uganda needs to be replicated in other countries.

    “We need to create inexpensive technologies that can be used indigenously to reduce the costs of identifying the microorganisms, determining their resistance to drugs and developing environmental and public health strategies,” he said. “I offer three conclusions: We have not paid sufficient attention to the massive loss of human life from newborn infections in the developing world; we now have the technology to shed new light on the causes of a substantial fraction of these deaths, and; we can now develop sustainable strategies and scalable technologies to more effectively prevent the deaths and tragic survivals from these devastating illnesses. The fate of millions of lives depends upon our actions.”