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Health care battle intensifies over 3-year-old Roseville girl

Child has rare Moyamoya disease, needs immediate surgery
By: Sena Christian, The Press Tribune
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A Roseville family is racing against the clock to save their 3-year-old daughter's life.

The girl, Evie Burror, needs brain surgery as soon as possible to reroute or replace two of four main arteries to her brain that have closed off. She has a rare, progressive cerebrovascular disorder called Moyamoya disease, and she is experiencing mini strokes.

"She is currently at risk for a major stroke at any moment to the point where they told us not to let her cry because the accompanying hyperventilating could cause one of the smaller arteries to burst," said her mother Lindsey Burror.

Because of Evie's life-threatening condition, her parents have been frantically researching options for immediate surgery, which Burror calls so dangerous it's a "one-time shot."

 They've found a veteran neurosurgeon at the Stanford Moyamoya Center who has agreed to perform the surgery. But the Burrors' insurance provider, Kaiser Permanente, won't let the family use this out-of-network doctor.

"Kaiser is pretty notorious for not letting people go out of network for anything," Burror said.

A Kaiser representative said they have a qualified doctor capable of handling Moyamoya cases. Patient confidentiality prevents the representative from commenting specifically on Evie's case.

Kaiser assigned a neurosurgeon to the case and the Burrors met with him July 3. But on July 13, he informed the family he was stepping down from the surgery, according to Burror. Kaiser referred the family to another neurosurgeon, Dr. Dachling Pang, in Oakland.

"Our physicians practice high-quality 21st century medicine and make treatment decisions based on what is best for their patients," said Dr. Jeanne Conry, assistant physician in chief of the Kaiser Permanente Roseville Medical Center, in a statement. "(Pang is) widely regarded as a national and international expert on highly specialized pediatric cases."

But the Burrors are concerned because this doctor hasn't performed nearly as many Moyamoya surgeries as the Stanford surgeon.

Kaiser is also unable to perform the last-needed test - an angiogram - on Evie until mid-August, which her parents worry may be too late.

"Requests for treatment outside Kaiser Permanente are reviewed and evaluated by Kaiser physicians who are experts in their field," Conry said. "These physicians consider each case individually and take into account information from many sources, including seeking opinions from additional medical experts inside and outside Kaiser."

Conry said if a particular course of treatment is medically appropriate and cannot be provided by Kaiser, patients "are provided those services outside of Kaiser."

Burror has been arguing with Kaiser representatives on contract verbiage regarding going out of the network, specifically with the phrase, "appropriately qualified." The family is unable to afford the surgery without insurance coverage.

"It's like a nightmare you can't wake up from," Burror said.

The nightmare began soon after she and her husband Nathan Burror adopted Evie from China in fall 2010. Her file noted muscle spasticity indicative of a neurological issue assumed to be cerebral palsy.

Evie's muscle tightness worsened, especially in her left leg, which is now so tight she can only walk on the big toe, said family friend Stefanie Hopper. In fall 2011, Evie began vomiting frequently.

"The vomiting struck my mommy radar as odd," Burror said.

Evie had an MRI on June 29 that showed signs of Moyamoya disease. Then the health care battle began.

Sena Christian can be reached at senac@goldcountrymedia.com. Follow her on Twitter at SenaC_RsvPT.