Brianna’s Dilemma : Must Her Foster Parents Choose Between Love and Money?

Life dealt Brianna Bird’s hand from the bottom of the deck.

She’s 6 years old, has medical and nursing bills of at least $25,000 a month and sleeps at night watched by a nurse in a bedroom that looks like a hospital room.

One five-shelf bookcase in the room is filled with medicine. Another has three shelves stockpiled with medical supplies. She’s hooked up to an oxygen tank at all times. Machines monitor her heart rate, her respiration, the level of oxygen in her blood. When she goes out, her foster parents use a smaller, portable oxygen tank that she lugs behind her on what she calls her “stroller.”

Like all little girls, Brianna plays doctor and plays with dolls. But her doll has a tube running into its stomach, just like Brianna does.

Tim and Lesly Bird, the foster parents, haven’t been doing too well lately either.

For a while they were high fliers, honored as “family of the year” by two different groups, honored with special awards from the county Social Services Agency for volunteer services four years in a row, honored for their work with high-risk infants.

But things turned difficult after they took Brianna into their home. They started trying to adopt her in 1984, a few months after she came home. The problem was that if they adopted her, they would lose the payments for her nurses, a bill that runs $10,000 to $12,000 a month.

Two years ago, a special law passed that was hailed as “paving the way” for the adoption. State Sen. Edward R. Royce, who sponsored the legislation, said it would allow foster parents caring for children with special medical needs to adopt them “with the knowledge that the funding the child needs will be continued.”

Despite the proclamations, state officials said they know of no family helped by the legislation. As for the Birds, Lesly said that since the law passed, “absolutely nothing has changed in our lives except we have a child who is two years older.”

It turned out there were hitches in implementing the law, and the Birds have found themselves battling bureaucracies all along the line. Tim Bird has had a job offer in Hawaii, where they have family and would like to live. But they worry that unless they can adopt Brianna, they’d have to leave her if they moved--or wreck themselves financially.

Tim and Lesly had taken in 100 or so foster children before Brianna--who has a variety of pulmonary and digestive disorders, many of them caused by her being born prematurely. They specialized in “high-risk” kids: children of drug addicts, girls who had been molested, infants who needed special medical care.

In a self-deprecating way, Lesly joked that she and her husband once were the county’s “star family” when it came to foster parents. They urged others to take in children. The privately funded, nonprofit organization known as Make-a-Wish of Orange County flew them to Hawaii for eight days in 1986, complete with two doctors and an intensive care nurse, and put them up at the swank Kahala Hilton.

But Lesly Bird said, “I don’t need any personal recognition for what I’m doing. I’m not doing anything special. I’m just doing what I have to do to survive.

“I’m not doing anything so anybody will like me or think I’m a great mom or think I’m better than anybody, because I’m not. We were put on a pedestal. We don’t belong there.

“We were given awards for being the best (foster) family in Orange County. We’re not. We’re just people. We argue, we go to the bathroom, we have down days and good days, and we’re burned out.”

Why not just continue the foster care situation? Why fight for adoption?

As a foster child, Brianna is the ward of Orange County, not the Birds. Lesly Bird said that on the frequent occasions she has to have Brianna admitted to a hospital, someone from the Social Services Agency must be notified, come to the hospital and sign the child in.

“I don’t even have the privileges of making the decision of admitting my child without somebody’s intervention,” Lesly Bird said.

They also worry about Brianna’s psychological development as she grows older. So far, she simply thinks she’s the Birds’ child. But as she gets older and learns about foster care, adoption, wards of the government and the rest of the jargon, will she worry that some day she could be plucked from the only family she has known since she was 5 months old?

Then there was the horrific experience of three years ago.

The Birds have wanted to adopt four of the 100 foster children they took in over the years. They succeeded with two brothers, now 11 and 12; they are still trying with Brianna. The fourth “didn’t work out,” and he left the house to go on his own.

But not long after, he was shot to death by the father of a former girlfriend. Police said the young man was killed when he tried to break into the house where the girl was staying with her parents. The police called the Birds at 3 a.m. to tell them their son was dead. The youth had identification still listing Tim and Lesly as his parents.

The Birds made the funeral arrangements, struggled through their sorrow and wound up with only a picture of the man who almost became their son. The man’s natural mother reached out from the past to exercise her right to claim and bury the body. The Birds were left with the grief, the memories and the knowledge that, without adoption, they legally had no connection to the man.

“I don’t want that to ever happen again,” Lesly Bird said quietly, firmly.

The Birds worry, too, about the effect that the struggle to adopt Brianna is having on their other children at home.

“The strain on the boys at home is tough because of the knowledge that their sister . . . gets more attention at times,” said Dr. David A. Hicks, a pediatrician who treats Brianna. Still, he said that considering what they’ve gone through, the “family has done remarkably well.”

Lesly Bird said it has been “very difficult” on the two boys still at home. Several months ago, she took one of them to a doctor because he was convinced he was dying of some special kind of pneumonia and needed a doctor to persuade him that was untrue, she said.

Her other son worries about AIDS. Lesly Bird said that most children, given heavy doses of AIDS education, “shrug off” a lot of what they hear. But in a house filled with medical equipment, the picture changes.

“Both of them have just had a real fear of dying,” she said.

Tim Bird said the family hopes to start professional counseling for the boys to help them cope. For one thing, Lesly said, when Brianna is being a pest, and her foster brothers lash out by saying “I hope you die”--a common expression for kids--”as soon as it comes out of their mouths, they freak.”

“We try to explain to them, ‘Be careful what you say, because we don’t want you to feel guilty if something happens to her. You’re not responsible for it,’ ” Lesly said.

The Birds are trying to find out who is responsible for the delays in adopting Brianna and who can help them speed things up.

After the legislation passed two years ago, Lesly Bird said Medi-Cal agreed to implement the law so long as the Birds agreed that Lesly would care for Brianna eight hours a day, seven days a week. If not, they had the right to take her out of the house and hospitalize her. Lesly wouldn’t agree.

The county Social Services Agency agreed with Lesly and worked out a compromise that provided two days a week of around-the-clock nurses, with Lesly picking up eight-hour nursing shifts the other five days.

This year caused her to be particularly happy she didn’t sign the original agreement. “I ended up with what they thought was cancer (it wasn’t), I had surgery, then I fell and injured my leg. . . . I’ve been in a cast for the better part of a year; I’ve been really sick,” she said. “And this would have been the year I would have had her taken away from me because I couldn’t provide the care.”

There also was a hitch involving Dr. Hicks, who wound up being Brianna’s doctor simply because he happened to be on duty the first time she was brought in to Children’s Hospital of Orange County.

Hicks was required to sign an agreement to always be on call for Brianna or to have a backup in case of vacation. Hicks said he signed the forms, but the chief of field services for the state agency that runs Medi-Cal, Frank DeBernardi, said two weeks ago that Hicks had not.

“The last I heard, we couldn’t get certifications (we) needed (signed) by the physician,” DeBernardi said, adding, “I have not heard anything about this case for about a year.” His agency’s San Bernardino office is handling the case, he said, and “if there had been any ongoing negotiations on this case, I would have heard about it.”

Gene Howard, children’s services director in the county Social Services Agency, said that so far as he knows, there is a tentative agreement with Medi-Cal that satisfies the Birds, though DeBernardi may be unaware of it.

But even the tentative agreement has not become final, despite the fact that more than a year has passed, the Birds said. Howard said a final agreement “is still being worked on.”

“It’s a very different kind of an agreement, . . . and it does take some time to put that agreement together,” he said.

The Birds worry that someday, even when the agreement becomes final, a budget cutback could lead Medi-Cal to trim their payments.

They are still banking on a lawsuit they won two years ago forcing the state to pay the Birds the same money they receive now even if they adopt Brianna.

The state, however, has appealed the verdict, and the case is dragging on with no end in sight.

The Birds’ desire to move to Hawaii has also complicated things.

Lesly Bird was raised in Hawaii and has parents, brothers and two sons from her first marriage there. In addition, Tim Bird, an electrical contractor, had a good job offer in Honolulu.

Tim Bird’s parents moved out of Orange County recently, and now, Lesly said, “We have kind of like no family support system” nearby.

But if the Birds did move to Hawaii and were able to take Brianna there without adopting her, there would be problems. California would not pay the Medi-Cal bills, DeBernardi said.

Howard wasn’t so certain, saying that it was “very unclear” whether Medi-Cal would cover Brianna if the Birds move. He said that the county tried to learn what Hawaii would pay for but that state declined to respond now “because the Birds don’t have a residence in Hawaii, so they can’t evaluate how the Birds can provide care for Brianna.” But the Birds won’t get a residence in Hawaii unless they learn what sort of financial assistance they would receive.

While the bureaucrats dither, Brianna’s condition slowly worsens.

“There are many things in her medical condition that are life-threatening,” Dr. Hicks said. The most dangerous is her lung condition, which requires more and more supplemental oxygen as the years go by. There’s also a pseudo-obstruction of the intestines that requires her to be fed intravenously and a gastrostomy tube to vent gasses from her system.

Brianna was hospitalized earlier this year to undergo a lung biopsy, which Hicks said he hoped would allow a change in her therapy. “Unfortunately, that did not give us any further information than we already knew,” he said.

The hope that Brianna will grow into adolescence and beyond “is dimming, because she is not improving during the last three or four years,” said Hicks. “If anything, she’s gotten a little worse in terms of oxygen needs.”

A year ago, in an eloquent written description of Brianna’s condition, Dr. Hicks said: “Please note that the goal is to allow Brianna to be an adult well-equipped to take on the rigors of society, to be able to contribute to society and to have fun with life.”

As she scampers around the house--to the limits of the 50-foot cord tying her to her oxygen tank--playing with the family dachshund and mimicking Lesly’s conversations, Brianna does indeed seem to be having fun.

But her ability to “take on the rigors of society” is in doubt, as the Birds well know. Even after millions of dollars in medicine, medical equipment and nursing, after foster care was arranged in an effort to keep her out of a hospital as much as possible, Brianna’s prognosis is doubtful.

Lesly Bird wonders how “to make our society and our government responsible for the children they choose to save. You know, the trend right now is to save everybody, don’t let anybody die. Who’s going to pay for it? . . . I’m a Christian, and I’m anti-abortion, and yet, Brianna has changed my perspective on life and death. If our society is going to save every pregnancy, then we’d better come up with the funding.”

Noting proposed cuts in the state budget for Medi-Cal, she asked, “How are we going to fund the lives of these children that cost millions and millions of dollars in their lifetimes to stay alive?”

Beyond that, there is guilt at the money spent on Brianna.

“I feel guilty because a lot of people have so much less than I do,” Lesly said. “But I was set up--not intentionally by anybody, but I was given promises and given commitments, and (I) made choices for my whole family. I have five other children; I have five grandchildren. You know, we had a pretty different life before. . . . I thought about . . . how could I just do it by myself, how could I just sign the adoption papers and . . . take care of her all by myself. What it would mean is her doctors would have her in the hospital probably a good half of the year . . . because I couldn’t do it 24 hours a day.

“I feel so guilty sometimes, I just want to say to the world out there, I know there are moms out there that have handicapped children at home with no help. I know that. But I also know that there’s suicides, there’s drug abuse, there’s divorce in these families. And a lot of these kids don’t make it because you can’t . . . manage by yourself.”

The Birds said that when doctors and social workers urged them to become foster parents for Brianna, they had no idea what they were getting into. Lesly said doctors told her and Tim that the infant had a condition “like asthma” and was simply listed as a “failure to thrive” baby. She had been born three months premature, weighing only 3 pounds at birth.

Tim, 41, and Lesly, 44, sold their house in Yorba Linda and rented a nearby house to help cover some of the bills that the state and county didn’t pay. Because of the time required for Brianna, Tim folded his business and limited his electrical work to part time.

Lesly took a federally funded job teaching parents of handicapped children how to get benefits due them. She treasures the job because it covers medical insurance for her and Tim.

Lesly was a divorced mother of three children, now aged 20 to 25, when she and Tim met and married in Hawaii. He adopted those three children, plus the brothers now living with the Birds.

They juggle their schedules in an effort to have one of them always at home with the brothers, sacrificing time together to be with their children. And they worry that state and county budget crunches could lead to cutbacks that might include the nurses they need to care for Brianna. Lesly described adoption as the carrot always hanging out there in front of them.

She thought back to the time two years ago when she and Tim were profiled in the newspapers and on television, when she lobbied in Sacramento on behalf of Brianna and other foster children. She called it “the great Bird story.”

“Well, I don’t feel like a great Bird anymore,” Lesly said. “I feel like a struggling mom, because I’ve had enough. I don’t want to play political games. I just want to be me again. I want to be able to do what I need to do to get Brianna the life that she needs for as long as it lasts, and I have no guarantees. It could be tomorrow. It could be 10 years from now. She has no chance of growing up, to be a you or me. There’s no physical chance of that happening.”

And in a down moment, she anguished, “I don’t want to be always burned out, struggling with social services and lawyers and judges and all this crap. I just want to get on with our lives.”