Getting care for baby Patrick

KENNEWICK — Nine-month-old Patrick's body is wracked with seizures daily.

His arms and legs are limp, and he lacks the motor skills of other kids his age.

Patrick Murphy has a birth defect called cortical dysplasia. The small child can be treated, but his parents and the insurance company can't agree on where that delicate -- and expensive -- surgery should be performed.

The Murphys insist Patrick should be treated by a specialist in Arizona and are nearly resigned to paying for the $200,000 surgery out-of-pocket. The couple's four other children are doing their share -- selling toys and lemonade to raise money for their little brother's treatment.

Part of Patrick's brain didn't develop properly in the womb, said Dr. David Adelson, chief of pediatric neurosurgery at Phoenix Children's Hospital in Arizona.

The abnormal part of the child's brain is firing off random electric signals causing epileptic seizures, which in turn can damage other parts of his developing brain.

The good news is that, based on exams, it looks as though the malformed part can be removed safely, Adelson said. And he's just the man to do it.

Adelson has performed about 750 epilepsy surgeries on children over the past decade, he said. Patients have about 70 percent to 80 percent chance of being seizure-free afterward.

That is why Shawn and Suzie Murphy want only him to open Patrick's skull and cut out part of his brain.

"You go to a pediatric neurosurgeon who does these day in and day out," Suzie Murphy said. "If we need to mortgage our house, that's what we'll do for Patrick."

They are facing that possibility because Group Health won't pay for the surgery in Phoenix. It's not that the company doesn't think the baby needs the surgery, or that it won't pay for expensive treatments.

Group Health already has paid nearly $500,000 for doses of a synthetic hormone used to curb Patrick's seizures, Murphy said.

And it has agreed to pay for the brain surgery, as long as it is done in its Washington network of providers.

"We rely on our network," said Katie McCarthy, a Group Health spokeswoman. "But we do cover out-of-state treatment when partners in our network can't provide a service."

That's not the case here, the company contends. Neurosurgeons capable of performing the operation are available in Washington, it has told the Murphys.

The insurance provider has not pointed them to a brain surgeon who has anywhere near the experience of operating on children as Adelson does, Murphy said.

But Seattle Children's Hospital has a pediatric neurosurgery department. The hospital is considered to be among the top 10 in the nation for children's health care, according to a survey by U.S. News and World Report.

And its pediatric neurosurgeons have performed the procedure Patrick needs "hundreds of times," said Dr. Edward Novotny, head of the pediatric epilepsy program at Seattle Children's.

"They never mentioned Seattle Children's as an option," Murphy said.

Seattle Children's Hospital is part of Group Health's network, McCarthy said. She could not say if the hospital was recommended to the Murphys, citing medical privacy laws.

Murphy said the family's referring physician, Dr. Noel Baker, a neurologist at Swedish Medical Center, had advised them against going to Seattle Children's.

Baker told them doctors at Swedish would be more qualified, Murphy said. But those doctors don't specialize in pediatric neurosurgery, which is why Patrick's parents want their child treated in Arizona.

Baker declined to talk to the Herald, citing privacy laws.

For now, the Murphys have appealed the insurance company's decision.

Wherever Patrick will be treated, it has to be soon. He is falling behind in his development while his brain is clouded by seizures and medication, Adelson said.

"Kids at that age are sponges; they take everything in," he said. "But his brain isn't able to absorb stimuli right now."

Patrick's family is "praying for a miracle" to get the surgery done at the place of their choice, Suzie Murphy said.

"If I didn't have my faith, I'd just get anger, grief and hopelessness," she said. "We have a lot of people praying for us."

The Murphys have set up an account under "Patrick Murphy" at HAPO Community Credit Union.

They also have set up a website -- www.caringbridge.org/visit/Patrickmurphy1.