Saving Gage: Rare procedure offers new hope

February 11, 2016

Hospital is one of few in U.S. able to perform surgery

Kansas City, Kan. — Before he was even born, Gage Weber's parents knew there would be trouble.

An in-utero MRI showed a fistula deep in his brain: A large vein had connected to arteries, bypassing capillaries and leading to a rare condition called a Vein of Galen malformation.

The problems can be many, especially for a newborn. Their tiny heart wears out quickly as it tries to pump enough blood through the fistula, starving other parts of the brain.

Gage's parents, who live in Kansas City, were first seen at another area hospital. Surgeons told them the procedure needed to save Gage was too advanced. The specialists who could help are in Boston, California, Texas – and, it turns out, at The University of Kansas Hospital.

His mother, Kelly Phillips, remembers her sense of panic easing when she met with surgeons at our hospital.

"All of a sudden there's a team right here willing to take on the challenge," she recalled. "The said, 'We've got it. We can do it.' It was literally the next day: Everything was set up and ready to go."

Interventional radiologist Alan Reeves, MD, and his team used a catheter threaded in the baby's groin to insert 35 hair-thin metal coils into a blood vessel near Gage's fistula.

They did it again the next day, inserting 35 more coils. The procedure, called endovascular embolization, blocked much of the blood flow through the fistula, allowing the baby's heart rate to ease from more than 200 beats per minute to 159, normal for a 3-week-old baby.

"It's amazing," said Reeves. "This is one of the most deeply gratifying things to see – a baby who would have died within days is now a healthy pink baby."

Gage, who is Reeves' youngest patient by far for this particular procedure, went home last week, barely a month after arriving at The University of Kansas Hospital. The coils will stay in place, harmless, as other blood vessels grow to supply the brain.

Neonatologist Krishna Dummula, MD, said research on the condition is rare, but it indicates a baby with a successful procedure, like Gage's, has a 60 percent chance of normal neurologic outcomes. Considering the alternative, he said, "that's a huge percentage."

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