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Surgery For Saving Babies From 'Water On The Brain' Developed in Uganda

About 180,000 babies develop hydrocephalus each year in sub-Saharan Africa. Baby Faridah received treatment for the deadly condition this year at the CURE Children's Hospital of Uganda in Mbale, Uganda.
Christopher Mullen, CURE International
About 180,000 babies develop hydrocephalus each year in sub-Saharan Africa. Baby Faridah received treatment for the deadly condition this year at the CURE Children's Hospital of Uganda in Mbale, Uganda.

It's not every day that surgeons develop a new brain surgery that could save tens of thousands of babies, even a hundred thousand, each year. And it's definitely not every day that the surgery is developed in one of the world's poorest countries.

But that's exactly what neurosurgeons from Boston and Mbale, Uganda, report Wednesday in the New England Journal of Medicine.

The treatment is for a scary condition in which a baby's head swells up, almost like balloon. It's called hydrocephalus, or "water on the brain." But a more accurate description is "spinal fluid inside the brain."

Inside our brains, there are four chambers that continually fill up and release spinal fluid. So their volume stays constant.

In babies with hydrocephalus, the chambers don't drain properly. They swell up, putting pressure on the brain. If left untreated about half the children will die, and the others will be badly disabled.

Aisha holds her baby daughter Faridah at CURE Children's Hospital of Uganda.
/ Edwin Ongom, CURE International
Edwin Ongom, CURE International
Aisha holds her baby daughter Faridah at CURE Children's Hospital of Uganda.

Traditionally doctors treat hydrocelphalus in the U.S. with what's called a shunt: They place a long tube in the baby's brain, which allows the liquid to drain into the child's stomach.

But a third of the time, these shunts fail within two years, says Dr. Jay Riva-Cambrin, a neurosurgeon at the University of Calgary. "Imagine buying a car and having the dealer tell you, 'By the way, there's a 40 percent chance the car won't be on the road in two years.' You'd be like 'No way.' "

That failure rate is tolerable here in the U.S. because children can be rushed quickly to a hospital for emergency surgery to fix the shunt, says Dr. Benjamin Warf, a neurosurgeon at Harvard Medical School, who led the development of the new method at a clinic in Mbale, Uganda. "Some kids wind up having dozens of these shunt operations over over the years," he says.

But for many kids in rural Uganda — and other poor countries — emergency neurosurgery isn't an option. "They're going to die from a shunt malfunction," Warf says. "I can't put a shunt in a baby and then send them back to a rural village in western Uganda or southern Sudan because it would take days to return to the clinic."

So Warf and his colleagues decided to innovate. They took a technique that works in adults and then tweaked it a bit so that it would have a better chance of working with babies.

In the new method, doctors basically poke a hole in the brain's chambers so they can drain. They also prevented the chambers from filling back up by partially damaging the region of the brain that produces spinal fluid.

The team knew the procedure fixed the hydrocephalus. They could see that the babies' brains stopped swelling. But the big question was whether or not the method could prevent brain damage as effectively as shunting does.

After 15 years of testing and optimizing, he and his team can finally say that their approach — at least in the short term — appears to be just as effective as the procedure commonly used here in the U.S.

In the study, Warf and his colleagues tested the two methods on about 100 children in Uganda. After 12 months, the doctors couldn't detect a difference in the children's brain volume or cognitive skills.

"Although there are big caveats to the study, I'm just so thrilled about it," says Dr. Tamara Simon, a pediatrician at the University of Washington, who wasn't involved in the study.

In particular, Simon says, the study followed the children only for only about a year. "We need a better handle on cognitive outcomes in general and more long-term studies," she says.

And all the children in the study had very low cognitive scores due to the brain infection that can cause hydrocephalus, so it might have been difficult to detect differences in outcomes between the two surgical methods.

"Still though, the work is really exciting, and I hope a similar study can now be done in the U.S.," Simon adds.

Yes, you read that correctly. The new technique has been so successful in developing countries that American doctors are now traveling to Uganda to learn how to do the technique from Ugandan doctors.

"The doctors at the clinic in Uganda are wizards at the [new] method," Riva-Cambrin says. "They're the ones that taught me the procedure."

Copyright 2021 NPR. To see more, visit https://www.npr.org.

Michaeleen Doucleff, PhD, is a correspondent for NPR's Science Desk. For nearly a decade, she has been reporting for the radio and the web for NPR's global health outlet, Goats and Soda. Doucleff focuses on disease outbreaks, cross-cultural parenting, and women and children's health.

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