6-Year-Old Girl Cured of Deadly Brain Malformation

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Berenstein had begun working on a cure in the 1970s. In a procedure called embolization, he closed the malformations using glue, causing the enlarged veins to eventually disappear and allowing blood to flow to the normal vessels at normal pressure.

"We started working with Krazy Glue – literally Krazy Glue we took from the hardware store," he said, adding that technology had since advanced to a medical grade version of the super glue.

The glue goes into the bad veins through a catheter, which is a microscopic tube that enters through the femoral artery in the thigh and snakes its way to the brain. The goal is to get the catheter to reach as close to the problem area as possible before injecting the glue – a delicate process that Berenstein prefers to undertake with a little music in the background.

But Berenstein wasn't Haylie's doctor back when she was a baby. She underwent several embolizations in Chicago, but a complication during one of them caused then-2-year-old Haylie to have a stroke. Hribal said she noticed the doctor giving Haylie extra high fives with both hands to test her after a procedure, but she didn't think anything of it.

"The next morning she was eating breakfast and her face just started drooping," Hribal said.

She called for help, and the doctor confirmed it was a stroke. He then told her that Haylie's case was over his head, and he didn't have a referral.

After frantic Internet searching, Hribal found Berenstein, or "Dr. B," as she and the rest of the vein of Galen malformation parents call him. They've since formed several Facebook groups to offer support and guidance to one another for a disease that was nearly always fatal just a few decades ago. Now, Berenstein says he can save 80 percent of people who have it, but the road to recovery is long and hard for the children and their parents.

For instance, Hribal remembers bringing tiny Haylie to her big sister's elementary school, prompting the older kids to tease Haylie for the blue veins on her face. Haylie's sister, Jocelyn, came to the rescue.

"'They're just beauty veins! They're beauty veins! Leave her alone,'" Hribal remembers Jocelyn shouting at her classmates.

After nine procedures in Chicago and another eight in New York, the veins on Haylie's face are nearly invisible. Her MRI, which she wasn't nervous about until the last second, looks just about normal. A year and a half ago, she had her final embolization, and last Thursday, Berenstein gave her the all clear.

"I feel like she's an old soul," Hribal said. "She knows how lucky she is, but she doesn't know why. At the grocery store, she will say, 'This is the best day of my life.'"

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