COLUMN ONE : A Father’s Ugly Fall From Grace : Ken Lakeberg was hailed for loving his conjoined babies so much he defied the odds to try to save one of them. Then came the claims that he was a publicity hound who used donations to buy drugs.

MAYWOOD, Ill. — It is a maxim around hospitals that you can always find some surgeon willing to take on even the most daunting operation. That’s what surgeons do, after all--operate.

So it was not entirely surprising when James A. O’Neill Jr., surgeon-in-chief at Children’s Hospital of Philadelphia, announced Aug. 18 that his team had agreed to operate on the conjoined Lakeberg twins, Amy and Angela. If any surgeons could succeed, if any surgeons could end up with one surviving baby, they could. Children’s Hospital surgeons had separated 10 sets of conjoined twins over the last 30 years.

Only the speed of the decision startled the doctors here at Loyola University Medical Center, where the babies were born and spent the first seven weeks of their lives.

Just two weeks earlier, O’Neill had advised Loyola neonatologist Jonathan Muraskas, the twins’ doctor, that he could not encourage surgery. Chances for success were remote, he’d said, given the twins’ shared, badly malformed heart. Days later, when Muraskas had gone back to O’Neill, urging that he accept the infants at Children’s Hospital and consider an operation, O’Neill had agreed to take them only for more tests, with no commitment to perform surgery.

We will spend two days evaluating the twins, then we’ll discuss our findings with the family, O’Neill told reporters Aug. 17, soon after the babies arrived in Philadelphia from Chicago, via a Lear jet and helicopter paid for by a Chicago television station.

By late the next day, that decision had been made. The Children’s Hospital surgeons, using MRI with special three-dimensional imaging capability unavailable at Loyola, had been able to visualize the shared heart and liver. It was possible, they’d concluded from studying that image, to construct for the surviving twin a malformed but functioning heart. The odds were better than they initially thought. They would operate within 24 hours.

“It would be best . . . not to say 1% or 5% or 10%,” O’Neill told reporters who, on the eve of surgery, asked about the odds of survival. “There is no meaningful figure at all.” While the likelihood that one twin would survive the operation was “remote,” he said, there was “some reasonable chance” of success. They were performing the surgery to abide by the parents’ “legitimate” wishes.

As did Loyola, Children’s Hospital said costs of the operation and care of the babies would be “absorbed” by the hospital, since the parents, Reitha and Ken Lakeberg, had no medical insurance. O’Neill did not directly explore the matter of cost-shifting--by which patients with medical insurance end up paying for those without--although he later said such operations as the Lakeberg twins’ are paid primarily by “philanthropy.”

“I readily realize there is a national debate on health care,” O’Neill said. “I realize that all of us have to deal with limited resources. But at the present time our society and our government say we should take care of everyone, and we indeed do that. We have not allowed money to be a consideration if there is any reasonable chance. If someone is going to ration care because of money, it’s not going to be us. It’s going to be government or society.”

At Loyola, many on the medical staff listened to O’Neill with skepticism and more than a little dismay. After much agonizing, after all, they had decided to recommend against the very surgery that O’Neill was going to perform. Concluding that such a futile cause did not justify the use of limited health care resources, they’d urged the Lakebergs to pull the respirator plugs on their babies.

It had been particularly difficult for Muraskas to stop fighting for his tiny patients. It had been even more difficult for him to tell the parents to stop--despite his feeling that the Lakebergs were a dysfunctional family grown addicted to the frenzied media coverage. He’d eventually done so, though, persuaded by advisers and the dire results from various diagnostic tests on the babies. Let them go, he’d begged the Lakebergs. Let them go to heaven.

It bothered some at Loyola that they now looked a little hesitant and unheroic in comparison to the Philadelphia surgeons who were basking in the lights of TV cameras. It bothered them even more that O’Neill was saying an operation was feasible after he seemed to agree with them that it was not. Most troubling of all was O’Neill’s apparent willingness to relinquish hard medical choices about rationing to others.

“I would much rather be involved in deciding these issues myself, rather than abdicate that role to ‘the government or society,’ ” said Dr. Thomas Myers, director of neonatology at Loyola. “I don’t want someone to hand me a list of guidelines to follow. I think it’s really dangerous to abdicate that responsibility. If we don’t take responsibility, someone else will.”

What the Loyola staff thought, however, mattered little now. The news vans had deserted their parking lot after occupying it for weeks. The media attention had shifted to Philadelphia, and those willing to operate.

The separation began at 8:05 a.m. on Aug. 20. Surgeons started at the abdomen, cutting apart the single shared liver. Then they moved to the chest cavity. About two-thirds through the process of rebuilding what would become Angela’s heart, Amy died when doctors cut off her blood supply. Working on, the noted heart surgeon Dr. William Norwood fashioned for Angela a heart abnormal in structure--with five chambers and two aortas--but not, he hoped, in function. After 5 1/2 hours, they were finished.

“You’ve got a baby girl,” O’Neill informed the Lakebergs, who had been napping, praying and crying in a waiting room. Angela, a solitary infant now, was wheeled to the pediatric intensive care unit. For her breathing, she had a ventilator; for her pain, morphine.

Back in Chicago, the Rev. Peg Schultz, a United Methodist clergywoman assigned to Loyola, cried when she heard that the twins had been separated. She’d been praying that their heart would give out before the surgery started.

*

There were, in the days following the extraordinary surgery at Children’s Hospital, more than a few critical voices heard.

Is it fair, certain ethicists and commentators began asking, that other families, by not bringing their cases to the media, don’t get the type of expensive health care provided the Lakebergs, and at times must watch their children die?

Is it right to pour unlimited resources into trying to rescue patients whose cases have received widespread publicity, while failing to provide basic care to many thousands of unknown people?

“We’re really good at rescuing identified lives--those we see on TV and magazine covers--but horrible at doing things that would benefit the unidentified masses,” observed Art Caplan, head of the Center for Biomedical Ethics at the University of Minnesota.

“There are kids with no tetanus shots, moms that have never been to the doctor or who have just given birth and don’t know how to feed their babies, and no resources are pointing in those directions. . . . I think a system that has nobody to say no to a million-in-one shot on an experimental treatment with a million-dollar cost isn’t much of a system. . . . At some point, the doctors have to step forward and say, ‘That level of chance is something we don’t do.’ ”

“True respect for human life was sacrificed in Philadelphia to bad slogans about sanctity and rescue, and, perhaps, to a dangerous love for heroic medicine for its own sake,” wrote Oxford and New York University law professor Ron Dworkin.

This disfavor with the operation, however, did not immediately reach to the family. Not until four days after the surgery did the news media’s pristine portrait of Ken Lakeberg begin to unravel.

Until then, there was mainly celebration over the Lakeberg family’s triumph in the face of slim odds. “I feel great. . . . Angela’s a fighter,” Ken kept telling everyone. If the journalists could not get enough of him, the reverse was also true. His penchant for the media spotlight, apparent to the Loyola staff for weeks, was now abundantly in play.

Muraskas, arriving in Philadelphia just as the operation was ending, had to laugh when a spokeswoman for Children’s Hospital--accustomed to families of conjoined twins wanting privacy--told reporters that the Lakebergs would not be immediately available for interviews.

“Ken meanwhile was cruising the streets of Philadelphia giving interviews up the ying-yang,” Muraskas recalled. “I flipped through the channels on the television in my hotel room and Ken was there, live, on every station.”

A press conference held by the Lakebergs on the morning after the operation seemingly ended after 15 minutes, when a haggard Reitha signaled to a hospital employee that she’d had enough. But minutes later, a buoyant Ken reappeared, explaining that he enjoyed talking with reporters.

“This is a once-in-a-lifetime thing for a guy, to get on TV and talk to the world,” Ken said. “I’m getting a rush out of it. . . . If they make a movie, I want to play the part of the father.” A movie deal “would set me up to where someday I could have my own business.”

A reporter did eventually ask him about the mounting cost, to the state of Indiana and the hospitals, for the care and treatment of his babies. By then the total bill was estimated to be approaching $1 million, including the surgery. Angela’s bed at Children’s Hospital cost $1,800 a day, and the full daily tab, what with diagnostic testing, lab fees and respiratory therapy, was thousands more.

“What should we do (instead)? Build a new prison?” Ken responded. “If there was a hundred Amy and Angelas that needed an operation like this, there would be money for them. This is America. This is not a Third World country.”

Amy’s funeral three days later, on Aug. 24, was meant by most family members to be private. Relatives had gone so far as to ask the florist not to tell reporters where flowers were being sent. But this veil of secrecy unraveled somewhat the day before the funeral, when police were called to the Silinovich & Wiatrolik Funeral Home in Merrillville, Ind., to break up a fistfight between Ken and a brother-in-law over whether to keep the tiny casket open or closed.

Then, according to relatives, Ken ended up inviting several local TV reporters to the funeral, and to the church dinner afterward. Family members arriving at the funeral home were met by a lineup of some 60 reporters, photographers and cameramen. During the service, and again at the burial site, cameras whirred and snapped as news crews pushed for position. One of Reitha’s sisters eventually fled in tears.

By now, the journalists were catching on. Reports began circulating that Ken had started asking to be paid “under the table” for interviews. There was even a report that he’d demanded money from the press to cover Amy’s funeral.

It was on the day after the funeral--Wednesday, Aug. 25--that the first stories emerged about Ken raiding the charity fund set up for his daughters’ medical expenses. Ken admitted taking $8,000 from a fund that had accumulated $9,300 in donations, but at first he denied it had gone to buy drugs.

“Sure, I went out and had some fun, but the fun’s over, man,” Lakeberg informed WBBM-TV in Chicago. “We ate at nice places. We traveled good. I mean, I think we deserved at least that much.”

Pressed to be specific, Ken acknowledged spending $5,500 on a used Chevrolet--”I wanted to spend $2,000 but at that price they were all junk”--and told of visiting Atlantic City “to see the ocean.” Beyond that, however, he had some trouble accounting for the money he’d taken.

Of one $1,300 withdrawal, he said: “We’ve used that money to go to Philly. Things are expensive out there. . . . I don’t know anyone out there to get drugs if that’s the question.”

Within hours, Children’s Hospital was carefully distancing itself from the Lakebergs. “The charity fund has nothing to do with the hospital,” a spokeswoman pointed out. Callers to the hospital’s public relations department--which had been arranging the Lakebergs’ news conferences--began hearing a recorded message saying, “The family is handling all their own decisions as to what interviews they want to make.”

Even Ken’s attorney started backing away. “I think Kenny is in over his head,” said James Lakin, who is also a part-time deputy prosecutor in Jasper County, Ind. “It’s just more than I want to deal with, frankly.”

No longer enjoying positive media attention, Ken attempted a bit of spin control. “I’ve got a few problems, but I’m not a criminal,” he told reporters at a packed news conference at 5 p.m. that Wednesday. “This has all gone too far. The main story is Angela, not my dirty laundry.”

Later that night, after hours of denials, Ken finally admitted using $1,300 in donations for a three-day cocaine binge in the week before the twins’ surgery. Confronted by Chicago’s WCAU-TV with the statement of a 17-year-old who claimed he helped Ken make the drug connection, he said, on the air: “I lost control of myself.”

The next morning, he amplified to reporters: “Yes, I did buy drugs, and I’m not proud of that. I feel devastated. I’m glad I can share this with you because I want to be honest with everybody from now on. I want to get the truth out. I’m glad that I had something like this to wake me up, to make me realize what I was doing.”

He promised to repay the $1,300, and he emphasized that he no longer had access to the charity fund. Drug abuse, he added, “is really a problem that a lot of people are facing. It takes a lot of nerve for me to stand up and admit this. I’d like to ask you all, now that I’ve admitted this, I want your support to help me. . . . Check up on me. Call me and ask how I’m doing. I really need support now, not criticism.”

A week later, on Sept. 3 at the Newton County, Ind., courthouse, Ken had reason to regret this invitation to the press. He was there for a hearing into charges that, by using drugs, he’d violated the one-year probation he’d drawn for stabbing his cousin the previous Christmas.

On the courtroom steps, while updating a gaggle of reporters about his movie offers--Martin Sheen’s production company was interested, he was expecting $25,000 in signing money, $125,000 overall--someone asked Ken where he’d been two nights before.

There were reports, it was explained, that on the way to this hearing Ken had stopped overnight in Altoona, Pa., for a drinking binge. Patrons and workers at Peter C’s in Altoona, a bar featuring exotic dancers, had told the local CBS affiliate that Ken spent most of the evening there, identifying himself as “the Siamese twins’ father,” drinking heavily, buying drinks for others, signing his autograph, asking where he could buy cocaine, and--when the bar closed--vainly inviting a dancer back to his room.

Ken denied the report, insisting he’d taken a Greyhound bus straight through from Philadelphia. Pressed further, he turned away from the reporters, saying “I’ve said all I want to say.”

With that, the Lakebergs disappeared from the public stage. Scheduled to appear in Newton County Superior Court on Oct. 15 to finally resolve the probation violation charge, Ken failed to show up.

Judge Daniel Molter promptly revoked bail, issued an arrest warrant and ordered Ken to jail for one year. He turned himself in to the Newton County Sheriff’s Department late that night, but waited until Monday, when he appeared in court, to explain his conduct.

“I’m not gonna lie to you,” he told Molter. “Friday morning I was drunk and stoned (on cocaine). I didn’t want to be an embarrassment and come into your courtroom like that.” Then he tried to bargain down his sentence to a year of weekends in jail.

Molter wasn’t interested. A year in jail it would be. “You have not,” the judge explained to Ken, “had a record of credibility.”

*

Watching the news media scramble to revise their portrait of Ken Lakeberg, the Loyola medical staff could not help but feel a certain sense of satisfaction, and even vindication.

It was not that they saw Ken’s character as directly relevant to their medical decisions--although Muraskas did venture to say, “It helps in weighing issues if you can say, this is a wonderful family. Knowing that when the baby survives he will go home to terrible conditions, that impacts all of us.”

It was more that the rest of the country was finally seeing the story as they, at Loyola, had viewed it from the start. This was important, for without the heart-tugging mythology, there were those at Loyola who felt the case might have unfolded quite differently. If people had seen the case more as a microcosm of the health care system’s problems than as a cause for celebration, the whole affair might not have spun so wildly out of control.

“By letting him decide, we--the news media and health system--empowered Lakeberg,” Tom Myers said. “That is what imbued him with such zeal. People jumped when Ken said jump. He never had that before, and never will again. . . . It really was the ultimate irony, seeing all this come out. We would all like to believe these kind of heroic ‘against all odds’ media stories, but deep down, we know that’s not the true story.”

“In essence, our news media did the same thing with Siamese twins as the Barnum & Bailey circus did in 1900,” said Craig Anderson, chairman of Loyola’s pediatrics department. “This was circus hucksterism. To what purpose? What was the great public service? It empowered a guy to heist a bunch of money from people. It really is bizarre. Then the media found out it had been had also. I was pleased when the true story came out.”

John Muraskas also was pleased, but not nearly as much as some of his colleagues. Where they eventually saw in the Lakeberg case a worthwhile opportunity to “face issues” about the health care system, he saw also an unwelcome example of what the future held.

When everyone is insured, after all, cost-shifting will end at hospitals, and with it the chimera of free medical care it fosters. If the doctors don’t ration then, someone else will.

Slumped in a chair in his small Loyola office one day recently, Muraskas shook his head uncomfortably at that prospect. He did not much want to explore the broader issues kicked up by the Lakeberg case. Questions about “the interests of society” draw impatient shakes of the head. “I know nothing of economics,” he interrupted at one point, raising his hand and turning his head to stop a conversation that had veered toward the topic of cost-shifting.

What Muraskas knows about--all he wishes to know about--are his patients.

He knows, for example, that Angela still lies in an experimental “negative pressure” respirator, a bottle-like structure that, like an old-fashioned iron lung, creates a vacuum, and so pulls out Angela’s chest.

He knows Children’s Hospital doctors, trying to wean Angela from this machine, have managed to get her breathing on her own for no more than a few minutes at a time, and then only with an oxygen mask.

He knows the Children’s Hospital surgeons nevertheless have upgraded her condition from critical to serious, and have said, “We’re aiming toward her eventually functioning normally.”

And he knows that’s far from a sure bet.

Angela’s lungs were beaten up by the seven weeks on Loyola’s ventilator, he points out, and by all the oxygen, which is a drug. She has lung disease and an unstable chest wall. She still is on 40% oxygen.

On the phone with Reitha’s sister, Georgia, one morning in mid-September, he said: “Will she make it? I hope so. What can I tell you. You know the odds, I told you from the start. She’s got a very long road.”

Once off the phone, he said: “Angela is stuck. Only time will tell. The prognosis is very guarded. Whether she will survive or how she will survive, I don’t know.”

To what degree he is responsible for this tiny infant presently trapped in a Children’s Hospital respirator, her head enclosed in a plastic hood, her bill growing by thousands of dollars a day, is a question that interests Muraskas less than it does his colleagues.

Explanations abound for what has happened, but in the end, a number of those who have watched the Lakeberg case unfold have come to believe health care choices--now, and under imminent reforms--finally must be made not in Washington but in places like Muraskas’ office. For that reason, some of Muraskas’ colleagues, even while admiring his character and skills, do not agree with his handling of the conjoined twins.

“This should not have gone as far as it did,” Myers said flatly, “and John was part of the reason.”

Muraskas dismisses this assessment as coming from colleagues who “weren’t dealing with the people, who didn’t have a full concept of what was going on.”

Whatever the outcome, whatever happens to Angela, this experience has left him unchanged, he insists. He has no regrets. He would still make the same decisions today. Given a similar case, he would still recommend against surgery--and he would still shrink from imposing his judgment on a family, even a family like the Lakebergs.

“I would hope, dealing with a different set of parents, they’d agree not to try surgery,” he said. “If they didn’t agree, I’m not sure I could ever overrule them. I’m not sure I could ever pull the plug against the parents’ will. If push came to shove, I would do what they want. I would try to help as much as I can.”

That doctors will have to make difficult decisions in the future, that doctors will face choices in situations far more ambiguous than the Lakeberg case, is a reality he acknowledges but does not embrace.

“I know we’re going to have to take the bull by the horns,” he said. “But it will be tough for me. I still have a lot of respect for human life. Maybe I’m sentimental, but that’s the way I am.”

Muraskas fell silent, slumping further down in his chair.

“Oh God,” he finally said. “This is mind-boggling.”