Stories about: hydrocephalus

Training neurosurgeons in a rare hydrocephalus procedure, with a little help from Hollywood

ETV trainer

A 4-year-old has a progressively enlarging head and loss of developmental milestones: a clear case of hydrocephalus. He undergoes a minimally invasive endoscopic third ventriculostomy (ETV) to drain off the trapped cerebrospinal fluid.

This requires puncturing the floor of the brain’s third ventricle (fluid-filled cavity) with an endoscope — while avoiding a lethal tear in the basilar artery, which lies perilously close.

There are no good neurosurgical training models for this rare and scary operation.

“We semi-blindly poke a hole through the ventricle floor,” says Benjamin Warf, MD, director of Neonatal and Congenital Anomaly Neurosurgery at Boston Children’s Hospital. “To make the technique safer and to be able to train more people, it would be very helpful to make that hole in a way that’s less anxiety-provoking.”

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Detecting shunt failure in hydrocephalus without imaging or surgery: ShuntCheck

shunts hydrocephalus
Antonio helped test a device that can tell whether a shunt is still working. (Photos: Katherine Cohen)

Antonio Venus-Reeve, 14, had his first shunt surgery for hydrocephalus when he was 2½ months old. Born at 25 weeks’ gestation, weighing less than two pounds, he had a serious brain bleed seven days later.

As Antonio’s head began to swell with excess fluid, neurologists at Boston Children’s Hospital told his mother, Joanne Venus-Williams, that Antonio probably would not be able to walk, talk or develop major motor skills. “Neurosurgery got involved and the team did daily spinal taps to draw out the fluid in his brain,” says Venus-Williams. “They were hoping he wouldn’t need a shunt, but we got to the point where we knew it was the way to go.”

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Hacking a solution for hydrocephalus… just not the one expected

A project that set out to build better shunts ended with potential ways to help kids avoid them altogether.
A project that set out to build better shunts eventually pivoted.

Shunts often are surgically placed in the brains of infants with hydrocephalus to drain excess cerebrospinal fluid. Unfortunately, these devices eventually fail, and the problem is hard to detect until the child shows neurologic symptoms. CT and MRI scans may then be performed to check for a blockage of flow—followed by urgent neurosurgery if the shunt has failed.

Early detection of shunt failure was the problem pitched last fall at Hacking Pediatrics in Boston. Two bioengineers, Christopher Lee, a PhD student at Harvard-MIT Health Sciences and Technology program, and Babak Movassaghi, PhD, an MBA candidate at MIT Sloan, took the bait.

“We heard that parents would not take vacations in areas without an experienced neurosurgeon around,” says Movassaghi, a former Philips Healthcare engineer with 32 patents in cardiology and electrophysiology. “We were intrigued to solve that.”

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Climate on the brain: Neurosurgeon’s work in Africa links hydrocephalus with rainfall

Ed. note: Ben Warf, MD, was just named a 2012 MacArthur fellow, receiving a five-year, $500,000, “genius” award from the John D. and Catherine T. MacArthur Foundation.

We know climate patterns can affect crop yields, fish populations in rivers, people’s allergies and more. Now, for the first time, research has linked weather patterns with a brain disorder in babies typically treated by neurosurgeons—one that causes cognitive impairment, spasticity and blindness.

In East Africa, twice a year, at the midpoint between the rainy and dry seasons, rates of hydrocephalus surge among newborn babies. It starts with a fever and sometimes convulsions; if they survive, the babies develop “water on the brain” and their heads enlarge dramatically.

Ben Warf, MD, a neurosurgeon at Boston Children’s Hospital, discovered this during his years as a medical missionary in Uganda. Working with a non-governmental organization called CURE International, he founded a pediatric neurosurgical hospital, doing about 1,000 operations a year—more than half of them for hydrocephalus—on children from Uganda and surrounding countries.

In the United States, hydrocephalus is typically part of a congenital disorder like spina bifida. But Warf found that 60 percent of the cases he and his Ugandan team were seeing arose from infections in newborns.

Working with mathematicians, Warf and colleagues crunched data from nearly 700 such cases against rainfall data for the children’s home villages, generated by the National Oceanic and Atmospheric Administration,

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Hydrocephalus: Tackling a global health problem

Benjamin Warf, MD, director of Neonatal and Congenital Anomalies Neurosurgery at Children’s Hospital Boston, developed a new treatment for infant hydrocephalus, or “water on the brain,” while a medical missionary in Africa, where hydrocephalus is common and usually untreated. His innovation, which has saved the lives of thousands of children, is minimally invasive, relatively inexpensive and has been taught to other surgeons in developing countries. The post below is adapted from Warf’s testimony last week before the House Subcommittee on Africa, Global Health and Human Rights (viewable on C-SPAN; jump to 17:54). John Mugamba, MD, whom Warf trained and who is currently medical director at CURE Children’s Hospital of Uganda, gave testimony in video form.

In 2000, my family and I moved to Uganda as medical missionaries to help start a specialty hospital for pediatric neurosurgery, the CURE Children’s Hospital of Uganda. At the time, there were no pediatric neurosurgical hospitals and few trained neurosurgeons in all of Africa.

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Building neurosurgical care in the heart of Africa: One doctor’s story

Warf with the Ugandan hospital’s first five surgical patients

In 2000, Benjamin Warf sold his house and a small farm in Kentucky and left his position as Chief of Pediatric Neurosurgery at the University of Kentucky. After giving away most of their possessions, Warf, his six children, and his wife boarded a plane for Uganda, believing they were leaving the United States for good.

It was the beginning of an extraordinary six-and-a-half-year journey, fraught with violence, racism and difficult living conditions. Warf, at the age of 42, quickly went from being a respected neurosurgeon with many friends to being the strange white man people pointed to and laughed at on the street.

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The birth of ShuntCheck: Family, love, passion, death—and ice

Spencer Neff, Patient #1, during his first ShuntCheck trial, Nov 2002
Spencer Neff, Patient #1, during his first ShuntCheck trial, Nov 2002

The year was 2002, and 10-year-old Spencer Neff was a spunky boy with hydrocephalus, a buildup of cerebrospinal fluid inside his brain. A surgically implanted shunt – a tube to drain the fluid – was in place. Like all children with shunts, he was at risk for having the shunt plug up and malfunction, and he sometimes got scary headaches. But Spencer was lucky to have a neurosurgeon uncle, Samuel Neff, who offered him an interesting proposition:  would you rather be paid to help with some research, or be a scientific collaborator?  Spencer chose the latter.

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A very narrow bridge: Translational research

“The whole entire world is a very narrow bridge….and the main thing is not to be ruled by fear.”
–Rebbe Nachman of Breslov, 18th century Ukranian Hasidic mystic

My lab studies hydrocephalus, probably the most commonly treated pediatric neurosurgical condition. Most people think hydrocephalus was solved 50 years ago with invention of the shunt. But the kids I see with brain water problems, and their parents, don’t think the challenge is over. They ask: Why do I keep having headaches?

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