Evangelina Lopez spends nearly every hour she is at home near the crib of her infant son. Nine-month-old Enrique Lopez is blind. His hearing is severely impaired. He is brain damaged. Nurses who examined him recently said the only outside stimulus he responds to is pain.
But when Lopez walks in after work in the evening, Enrique begins waving his arms and legs. Through the web of feeding tubes and breathing pipes and electric monitors that keep her child alive, she swears, he responds to her voice.
That special bond between mother and son is at the heart of a legal battle that Lopez is waging now to make sure her son is allowed to stay at home--a battle she may be slowly losing.
A Superior Court judge on Wednesday refused to order her insurance company to continue paying for the expensive 24-hour-a-day nursing care that Lopez claims Enrique needs to survive.
Now, her attorneys say, Lopez is faced with the prospect of sending Enrique to a state hospital or trying to care for him herself at home--something Lopez believes she isn't able to do.
"I am fearful that he may die if left alone with me," Lopez, who does not speak English, said in papers filed with the court Tuesday afternoon.
Attorneys for PacifiCare, the health maintenance organization that has paid for Enrique's $480-a-day nursing care since May, say they have more than met their obligations, and they hope that state health programs like Medi-Cal may be able to come to Lopez's aid.
"This is a heart-wrenching situation, to say the least," said Peter Rank, the former state health services director who has represented PacifiCare in the Lopez case.
"The whole country is under a crisis in paying for the cost of health care, and one of the major moral and legal and financial dilemmas that every policy maker is dealing with is where do you draw the line, how much can you pay for individuals where there is little or no hope?"
Enrique was born in December--when Lopez, 32, had completed only her sixth month of pregnancy--and spent his first several months in a neonatal intensive care unit. He was progressing well there until late March, when he inhaled some food and suffered cardiac and respiratory failure, and came away from the incident with heavy brain damage.
PacifiCare, which had paid all the hospital bills, agreed to provide a week's worth of 24-hour-a-day nursing care in Lopez's home. That, they said, would be long enough for Lopez to learn to care for the child herself.
But the baby proved to be far too much to handle for the single mother, who makes $600 a month working 10-hour days at a pillow factory to support herself, Enrique and her 7-year-old daughter.
Enrique is fed through a nasal tube, and occasionally the area around the tube becomes inflamed. He breathes through a tracheal tube, which must be suctioned every 10 minutes to prevent a build-up of mucus.
He takes eight medications to control infections and seizures, but must still be connected to special monitors because his breathing could stop at any time. Twice a day, his lungs must be cleared of mucus, a 45-minute process. Occasionally, his lungs must be manually reinflated.
And while he has improved somewhat during his months at home and may eventually no longer need constant monitoring of his heart and lungs, doctors say Enrique will always need a "substantial level of care."
Lopez said that while she has tried to learn to operate the equipment that keeps her baby alive, she still panics when something goes wrong.
Moreover, because of the baby's need for constant care, Lopez said the loss of the nursing help would mean she would have to quit her job--and thereby lose all of her medical insurance coverage.
In a lawsuit filed against PacifiCare in July, Legal Aid attorneys representing Lopez claimed that the insurance company, by timing its first threats to cut off nursing payments with the day Lopez was scheduled to return to work, had attempted to force her to quit her job, thus removing the admittedly expensive case from its benefit rolls.
PacifiCare spokesmen deny they were trying to force Lopez to lose her job and insurance coverage, and claim that their representative never threatened Lopez with an outright cutoff, but merely called to inform the mother that the coverage was being "re-evaluated."
The bottom line is that PacifiCare's insurance contract agrees to pay for "medically necessary" services, and a team of experts who have reviewed the case have determined that 24-hour-a-day nursing care is not medically necessary for Enrique, attorney Joseph S. Konowiecki said.
The insurance company has provided coverage this long only because of "a perceived moral obligation," the firm said in papers filed with the court.
"Simply because Mrs. Lopez desires to have the benefit of non-medically necessary 24-hour nursing care for her child does not impose a duty upon PacifiCare to provide such care."
The director of pediatric nursing for the nursing service that has been caring for Enrique--at PacifiCare's expense--agreed with Lopez that it would be unwise for her to take over the baby's care.
The child "requires skilled intervention and medical assessment, because at any moment, for example, his color changes could become life-threatening should a nurse not be available and ready to intercede," Leslie Nichols of Personal Care said in a court declaration.
"In my opinion, Mrs. Lopez is not medically trained to assume the care of Enrique," she said. "Moreover, it would be physically impossible for her to care for Enrique given the constant care he requires."
PacifiCare countered with declarations from other medical experts, including Enrique's doctor, claiming that Lopez is capable of caring for the baby.
"The only reason why Mrs. Lopez cannot provide 24-hour care is based upon her status of a single parent and a full-time worker," the company said. "Under the terms of the subject HMO contract, the status of the parent and/or legal custodian is not determinative of whether in-home care is medically necessary."
Judge Warren Deering sided with PacifiCare in refusing Wednesday to issue a temporary restraining order requiring the insurance company to continue paying for the nursing care, which is now scheduled to be phased out over a 35-day period. A hearing on whether to issue a preliminary injunction reinstating the care is scheduled for Oct. 6.
If PacifiCare stops paying for the care and Lopez finds she cannot care for Enrique herself, Konowiecki said, she has the option of committing Enrique to a state hospital or applying for state Medi-Cal aid to help pay for home nursing care. Under some conditions, Medi-Cal may pay for up to 16 hours a day of nursing care.
But Medi-Cal help is available only if state officials determine it would be cheaper to pay for the in-home nursing care than to pay for Enrique's care in a hospital or nursing home. So far, state officials have not made a determination.
"What's going on here is an attempt to shift to the taxpayers and the public sector a bad bargain," said attorney Marilyn Holle of Protection and Advocacy Inc. "This is, in our opinion, a risk of doing business. But I think what we really have is a situation where the HMO doesn't like the way the dice were rolled."
Said Rank: "I think there are a lot of cases where a lot of parents, for very appropriate religious and moral reasons, carry on hope for a child where medical people might say there is no hope. I don't think that's unusual at all."
But on the other hand, he said, "every HMO wants to provide the lowest possible premium to their subscribers. It's just like any other insurance thing. If you're rating it honestly, they're under an obligation not to allow inappropriate utilization of their program."