CURE Hydrocephalus and Tom’s Story

CURE Hydrocephalus, an initiative of CURE International, was spawned by the encouraging results achieved through CURE Children’s Hospital of Uganda. CURE-Uganda opened in 2000, and since then, over 4,000 surgeries have been performed and ten surgeons (from nine different countries) have been trained for a single goal: addressing hydrocephalus. Through the combined efforts of this treatment and training, over 5,000 lives have been saved.

Based upon expert estimates, the world sees at least 300,000 new cases of hydrocephalus each year in children less then 1 year of age. Unfortunately, these estimates are most likely low. CURE is committed to doing all we can to treat those children afflicted with this condition, understand the causes for hydrocephalus and training others in the most modern and effective techniques.

CURE Hydrocephalus is an internationally collaborative initiative. Its roots grow from 2000, when Dr. Ben Warf, a renown pediatric neurosurgeon, moved his wife and six children to Mbale, Uganda to serve as CURE-Uganda’s first medical director. Through rigorous research and analysis, Dr. Warf developed a novel and efficacious approach for the treatment of hydrocephalus: endoscopic third ventroscopy combined with choroid plexus cauterization or ETV/CPC for short, a shunt-less technique which creates a pathway for the spinal cord fluid through a ventricle at the base of the skull. He tirelessly pursued better methods of treatment because although a shunt is appropriate for certain cases, a shunt can become clogged and it’s failure can be life threatening, especially in developing world settings. Dr Warf’s research is well documented in peer-review journals, and he instituted a training program for surgeons. As a result of this effort, one of his first graduates, Dr. John Mugamba, a Ugandan pediatric neurosurgeon fellowship trained in South Africa, was able to succeed Dr. Warf in 2006, continuing both the patient care and surgeon training.

Other surgeons, researchers and individuals like Dr. Steve Schiff of Penn State University bring their expertise in analysis to help determine the causes for post infection hydrocephalus and how best to prevent those infections. Dr. Schiff is a member of the medical advisory board for CURE Hydrocephalus assisting Dr. Warf, now with Children’s Hospital Boston and Harvard Medical School, in his leadership role as senior medical director. I, Jim Cohick bring my background of healthcare administration, work with CURE International’s earliest hospitals, with CURE’s clubfoot program, serve as executive director for CURE Hydrocephalus.

Each year CURE Hydrocephalus plans to steadily increase capacity to address more cases of hydrocephalus. We learned many useful lessons from CURE-Uganda which are integral parts of an on-going solutions:

  1. Provide care coordinators for pre- and post-operative interactions with families of patients
  2. Create conduits for receiving prompt technical vendor assistance
  3. Maintain a robust database environment for gathering data, reporting, and learning
  4. Create and foster collegial collaborations between surgeons from the west and the developing world.

So far we are very encouraged by the strong interest of government agencies and larger capacity funders to fund work showing measurable evidence of saving lives. A recent article out of Harvard estimates that close to 2billion people throughout the world – mostly in developing world settings – have little or no access to surgical care. Our ability to treat and train for caring for hydrocephalus is catching the attention of those concerned about doing life saving work reaching more people through expert medical and surgical care.

Our motivation is only increased by the stories our patients and their families share about their journey to find help to combat this condition. Tom’s story is uplifting and heartening about how the good work at CURE-Uganda not just healed him, but literally saved his life.

Check out his story.

Meet Tom from CURE Video

Posted by: Jim Cohick

Jim has posted 19 articles.

From CURE's beginning in Kenya through 2013, Jim served in a number of roles in the organization, including SVP of Specialty Programs, overseeing CURE Clubfoot Worldwide and CURE Hydrocephalus.

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2 Comments:

Jean,

We’re excited too! Thanks for your thoughts and support of CURE!

I am thrilled to read about Tom and others who are being healed through CURE. My hope is that the healing work at CURE will be spread around Africa and all countries so that no child must die from this curable disease.

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