COLUMN ONE : 2 Babies, 1 Heart and a Dilemma : The tiny Lakeberg twins forced doctors to confront wrenching questions about the moral, financial costs of separation surgery. Should they sacrifice one sister to save the other?

MAYWOOD, Ill. — Looking down at 7-week-old Angela Lakeberg just minutes after the extraordinary, much-ballyhooed Aug. 20 operation that separated her from her conjoined twin Amy, Dr. Jonathan Muraskas knew he should feel elated. After all, that’s how everyone else appeared to feel.

The excitement in Philadelphia that day was overwhelming. Flying in from Chicago, Muraskas--a Loyola University Medical Center neonatologist who served as the twins’ doctor for their first seven weeks of life--had found 15 reporters and photographers waiting to greet him at the airport. Arriving at Children’s Hospital of Philadelphia, he’d discovered dozens of news media trucks wrapped around the building. Standing alone in the back of a clamorous press conference, he’d listened to chief surgeon Dr. James A. O’Neill Jr. describe his astonishing accomplishment to a crowd of more than 100 journalists from around the world.

As planned, the weaker Amy had been sacrificed to save Angela. As planned, Angela had kept the twins’ single malformed heart. “At this time, we’re pleased to say that Angela is stable, comfortable . . . ,” O’Neill reported. “We are pleased and hopeful that this family will be able to have Angela. . . . It is encouraging to have come this far.”

Muraskas, however, could not share all the enthusiasm around him. This is crazy, he thought. We’re losing control. People are celebrating. No one’s concentrating on the fact that Amy is dead. No one’s concentrating on Angela’s condition.

Angela might well never leave Children’s Hospital, Muraskas knew. If she did, he also knew, she’d need special care--an “optimal environment,” they called it. But Muraskas could not, even in his most generous stretch of imagination, call the Lakeberg family an optimal environment. “Stormy,” was more like it. The mother was slow and overwhelmed. The father was a violent substance abuser with an unpleasant enthusiasm for the mounting media attention.

Muraskas hadn’t wanted any of this to happen.

After wrestling all through July with a microcosm of the current national health care debate--when to set priorities, how to allocate resources--he had decided they shouldn’t do this operation. The costs were staggering, the chances of success remote. In early August, on Loyola’s campus in the Chicago suburb of Maywood, he had begged Ken and Reitha Lakeberg to pull the ventilator plug on their newborn twins. “Let’s feed them and keep them warm and put them in God’s hands,” he had urged.

His pleas had failed. Was it the news media’s fault, for egging everyone on with a fairy tale about courageous folks battling impossible odds? Was it the health care system’s fault, for allowing doctors no recourse when families--even dysfunctional, manipulative families--demand expensive and nearly futile treatment? Or was it his own fault, for failing to slam the gate quickly and firmly on the Lakebergs?

Muraskas could not say.

Standing over tiny Angela as she lay under a cluster of wires and tubes, hooked to an experimental ventilator--one on which she is still dependent--the perplexed doctor could only wonder: How did this happen?

*

Reitha (Joey) Lakeberg, accompanied by her mother and sister, first appeared at the Loyola Medical Center’s outpatient clinic at 2 p.m. on Jan. 18. The appointment schedule listed her as a “possible conjoined twins.” To Dr. Paul Fomich, the obstetrician handling the ultrasound scans that day, this shy, 5-foot-2, 89-pound woman looked startlingly frail.

He flipped through the paperwork. She was 24. She came from a rural reach of northwest Indiana. She, her husband and their 5-year-old daughter lived in a trailer, on welfare, without medical insurance. Down there, on Dec. 23, at 11 1/2 weeks, an ultrasound scan had suggested she was carrying twins joined at the chest, sharing a common heart. On Dec. 30, she’d had a second, confirming scan in a Chicago radiologist’s office. She had come to Loyola on her own.

As a teaching institution and referral center, Loyola is obliged to accept all who show up on its doorstep. The cost of care, and the patient’s ability to pay, are not to be considered.

So Fomich examined Reitha Lakeberg. On his sonar screen, he saw two heads, two sets of upper and lower extremities, but only one heart and one liver. He showed the three women the monitor. “Yes, they are conjoined,” he told them.

Much more than that, he could not say. Because the fetuses were just 14 weeks old, because he couldn’t see possible complications on his screen, Fomich talked only in vague terms.

“This is very unusual,” he said. “You need to know the prognosis of things turning out OK is extremely low, really dismal. Having even one surviving baby is a long shot. I don’t know whether surgery would be feasible after they’re born.”

There were also risks to the mom, Fomich explained. They would need to do a Caesarean. There was the chance of infection and blood loss. They might have to cut her uterus in half to get the babies. They might have to do a hysterectomy.

Although Loyola is a Catholic institution, Fomich felt inclined to broach the subject of abortion. He chose his words carefully, making sure not to steer her. “In this type of situation,” he said, “other people in similar circumstances have chosen to terminate.”

Later, speaking to the news media in the weeks before she and her husband finally retreated into silence, Reitha said, “I decided to keep the babies because they were mine. I couldn’t just give them up. I thought about me. What if I was in an accident and I had a chance to live? I’d want the chance. I put myself in the babies’ shoes.”

Now, though, in the Loyola outpatient examining room, Reitha offered little in response to Fomich’s words. She was flat, emotionless. Fomich thought her simple-minded. He doubted whether she understood what he’d said.

Most families agree to terminate when they hear such a discouraging report. But even at this early moment, Fomich sensed the Lakebergs were going to have their babies. Maybe that’s why they came here to Loyola, he mused. Maybe they figured a Catholic hospital would be less likely to try to stop them.

If so, there was nothing he could do. “The decision was up to them,” he said later. “At the moment, the system allows them to decide. The system does not allow me to tell them what to do.”

Fomich had only one card to play.

“I think you’d better meet Dr. Muraskas,” he told Reitha Lakeberg.

*

The obstetricians at Loyola often send patients with problem pregnancies to Muraskas. They do so partly because Muraskas, as a neonatologist--a specialist in the care of newborns--can tell parents what kind of babies they will be getting. They also do so because Muraskas--a 37-year-old bachelor engaged to be married next spring--is considered particularly good at talking to all sorts of parents.

His manner with them invariably is low-key and natural. Watching him sprawl in his chair or lunge clumsily for his phone, his fingers hitting the wrong buttons, his elbows scattering the mess of papers on his desk, they see he is an informal man. Hearing him talk fondly of Sundays spent drinking beer and watching Bears football games in South Side bars, in the Chicago neighborhood where he grew up and still lives, they see he is not unlike them. So they relax. They begin to chat.

Which is what Reitha Lakeberg and her sister Georgia did upon first meeting Muraskas in late January. Georgia did most of the talking, the doctor recalled later, but both wanted him to know there was a problem in their family.

Reitha’s husband, Kenny, an unemployed welder, had difficulty controlling himself. He was given to drunken, all-night partying. “Kenny’s a wild boy. Kenny can be a little on the wild side,” is how Georgia put it.

He’d torn up their trailer when he first heard that the twins were conjoined. Two days later, on Christmas, he’d stabbed his cousin with a butcher knife during a drunken argument over the babies, and had ended up pleading guilty to battery. He had a problem with marijuana and cocaine and alcohol. He had a six-year record of arrests for drunk driving and battery.

In time, the women asked Muraskas for advice: Should they continue with the pregnancy?

Muraskas hesitated. He is a practicing Catholic. Whether to terminate is not usually an issue for him, since by the time he sees the mothers, they are almost always well past the legal deadline for abortion.

The choices he makes usually have to do with newborns. He can keep alive kids who were born weighing under three pounds, but he knows half will bleed into their brains. He often doesn’t know what he’s salvaging. He has no set rules, for there are none.

Certainly, the character of the parents doesn’t matter--at least it’s not supposed to matter. He usually lets the kids tell him what to do. A kid on a ventilator isn’t necessarily knocking on death’s door. But when a kid full of medicine keeps “carding”--going into cardiac arrest--he’s saying he wants to go to heaven.

Preparing for the Lakeberg appointment, Muraskas had visited Loyola’s medical library and consulted experts at other teaching hospitals. From them, he had heard a wide range of odds for one conjoined baby with a shared heart surviving a separation--everywhere from 5% to 50%. He knew those figures meant little. He knew also that they couldn’t yet judge the complexity of this case. But he felt the family deserved to have some idea of the odds.

So, sifting through the available data, he’d fixed on a 10% to 20% chance of one baby surviving.

To Reitha and Georgia, he now carefully chose his words. “If it were my wife, I probably would not go through with it,” he said. “The prognosis is terrible. One child will die during separation surgery. There’s an 80% chance the other will too. But it’s your child. There is no wrong answer.”

Later, Reitha said of this moment, “I was happy . . . because I felt like I got a chance to save one of them. And it was just overwhelming.”

Like the obstetrician Paul Fomich before him, though, Muraskas did not think Reitha fully comprehended his words. Also like Fomich, he thought he knew what was coming.

“My impression was, they would consider the numbers, but felt if God gave us this, dealt us these cards, they probably would go through with it,” Muraskas said.

The doctors’ last chance to argue convincingly to stop the pregnancy probably came on May 3, when a fetal echo-cardiogram told them the twins not only shared a heart, they shared an abnormal one. The doctors still couldn’t see precisely how anomalous it was, but they now knew there would be even more trouble down the line than they had expected.

“Seeing this report made me think it unlikely for either twin to survive,” said Fomich. “I did not think they were candidates for surgery.”

Reitha was then just over 25 weeks’ pregnant--past the legal limit for an abortion in Illinois, but not everywhere.

You could leave the state, Loyola doctors advised the Lakebergs. We can refer you to a physician in Wichita. He does third-trimester abortions when anomalies are found late in pregnancies.

The Lakebergs weren’t interested.

Ken Lakeberg made that perfectly clear to Muraskas when they finally met. Utterly unlike his wife, Ken, 26, is big, talkative and burly, over 6 feet tall, with a chubby face and thick arms decorated with tattoos. For his appointment with Muraskas, he wore what would prove to be his usual uniform--shorts and a sleeveless undershirt that revealed a broad, hairy chest. The doctor thought him a fine guy.

“I knew his type,” Muraskas explained. “Sitting in the bars on Sundays, I mingle with all sorts--truck drivers, bikers, everyone. I like them. When Ken walks in with his tattoos, I know him. I can deal with this type; I even prefer it after a week of medical people. Ken’s probably a redneck good ol’ boy who gets rowdy after a few beers, I figured. But that was OK.”

Listening to Muraskas once more go on about terrible prognoses and dire risks, Ken did not appear impressed.

It was Reitha who wanted to have the babies, he would later explain to reporters. He had been scared but she had “changed my way of thinking about it,” by asking whether he’d want a chance if “it was you that was inside of me.”

“We’re going for it,” Ken announced when the doctor finished.

Muraskas shrugged. You give them the data, he told himself, then you support their decision.

*

There were no big surprises in the first moment after Loyola obstetrician Nancy Carlson delivered the twins on June 29. Muraskas had feared the babies--facing each other chest to chest--might be “kissing,” but their mouths were far enough apart for them to breathe and take tubes. Their breathing was satisfactory, although labored, for they were in a sort of bear hug, squeezing each other’s chests. In the late morning, Muraskas put prongs up their noses to help but not force breathing.

That wasn’t enough, though. “By late afternoon, the blood gases were telling us the kids weren’t going to make it by themselves,” Muraskas said.

Here was a critical turning point in the story of the Lakeberg twins, one that is still debated today. Here was when the doctors had to decide whether to put the babies on mechanical ventilators--or to let them, in Muraskas’ words, “go to heaven.”

They had delivered the babies now, at 37 weeks, because an amniocentesis had told them the twins’ lungs were “cooked”--mature. If the newborns still needed help breathing, even though their lungs were mature, the point of a mechanical respirator was dubious. You were buying time--but for what?

Muraskas believed there was reason to plug in the machines. The babies’ bear hug just had not allowed their lungs to grow and expand, he reasoned. They’d be stuck on the ventilators for a long time, but they could get better.

Muraskas went to his boss, Dr. Thomas Myers, Loyola’s director of neonatology. “They need to go on respirators, Tom.”

Myers raised his eyebrows. “John?” he said, his tone full of warning.

If the babies have mature lung cells, then something else is wrong, Myers figured. They probably don’t have enough air sacs; their lungs are too small. They could develop more air sacs while on a respirator, but they wouldn’t be normal ones, not with a ventilator forcing oxygen against the lungs at three times normal pressure. Myers didn’t think the babies were ever going to breathe on their own.

“If you need a respirator now,” he asked Muraskas, “how do you know you’ll ever get them off?”

“The people I’ve talked to said they might need transitory help,” Muraskas replied.

“I would be skeptical of that,” Myers said.

Muraskas felt “a little ticked off” at Myers, as he later put it. He respected the hell out of Tom, but Tom was a stickler. He saw it totally the opposite from Tom. The two men stood now, staring at each other.

A twitch in Muraskas’ left eye sometimes belies his easy-going manner, particularly when his mind is not engaged. He can’t sit still at a hospital cafeteria lunch table. His head swivels, his eyes dart, he fidgets, he blinks, he scans the room. “I hate to admit I thrive on stress, but it’s true,” he apologizes.

He was in his element now. He held Myers’ gaze.

“There are no experts,” Muraskas said. “This is treading new ground.”

“Let’s at least specify a time limit for the ventilator,” Myers suggested. “One week at most.”

Both doctors instantly understood the problem with that idea. Once they stuck the plug into the wall, they would need the family’s OK to pull it out. That was not likely. Withdrawing life support becomes more difficult as time goes by. The baby develops a personality, the family grows attached.

Only now, at this moment, before the plug went in, could the doctors decide on their own. Only now could they act based purely on what was medically indicated.

The babies were rapidly deteriorating, though. Neither doctor felt this was the time to debate the issue.

You don’t make life-and-death decisions in the delivery room, Muraskas believed. You get the kids out, you do a work-up, you see what you’re dealing with before you decide to withdraw life support. It was just too early. He couldn’t let them die at six hours.

“I didn’t impose my own will,” Myers said later. “Maybe I wasn’t sure enough of myself. I also wasn’t willing to overrule the doctor on the floor.”

So at 4 p.m. on the day of the twins’ birth, two mechanical ventilators hummed into action in Loyola’s neo-intensive care unit. Soon they were banging away on Amy’s and Angela’s lungs, forcing upon them the breath of life.

*

The decision to put the twins on ventilators, made in an instant on the floor of the delivery room, pulled Loyola’s medical staff into a treacherous quagmire.

They now had two very sick conjoined babies in their neo unit who would not long survive as they were. Twice in those early weeks, in fact, the twins almost died from massive infections and septic shock, saved only by Muraskas’ fierce efforts. (“I thought nature would take its course in this case, but unfortunately, John is a very good doctor,” is how Myers would recall these incidents.)

Sooner rather than later, they would either have to separate the twins, or pull the plug on their ventilators.

If they separated them, one would die on the operating table, at the moment the surgeon cut her artery.

Even then, there was only a remote chance that the second baby would survive--no conjoined baby with a shared heart had ever survived surgery for more than four months.

Faced with these circumstances, the Loyola medical staff proceeded on two fronts.

They began, tentatively, to make preliminary plans for how they might handle a surgical separation. They picked out a possible date for an operation. They drafted a consent form in which the Lakebergs would acknowledge the “significant risk” of “prolonged hospitalization on a ventilator” and “profound neuro-developmental delays” for the surviving twin. They visited the Cook County district attorney, seeking immunity from criminal prosecution for what in effect would be the killing of one twin during the operation.

At the same time, they sat around conference tables, asking themselves whether they should operate at all.

Is it right to sacrifice one baby so that the other can live? they wondered.

What if it’s highly unlikely the second baby would survive?

With such long odds, would surgery be treatment or experiment?

If you’re not going to intervene, is it even appropriate to run more tests on these babies?

If Amy and Angela have only one heart, is there only one person? Can surgery be considered an amputation?

Do regulations protecting severely disabled newborns mandate treatment? Could Loyola be sued for not operating?

Should parents’ wishes always prevail? If not, who chooses?

Inevitably, the discussions finally, reluctantly, began to touch on the matter of cost. The twins’ ICU bed alone cost $3,500 a day; their total tab at Loyola would eventually reach more than $300,000. Of this, Indiana Public Aid paid just $997 a day. Loyola was talking about “absorbing” the balance, but this term, everyone knew, was at best misleading.

Those patients who did pay their bills were the ones who would “absorb” the costs--they and their insurance companies. Such cost-shifting is universal. Unpaid bills such as the Lakebergs’ are built into all hospitals’ price structure--and ultimately into insurance companies’ premiums.

“That’s the way it’s been going on for as long as I’ve been around,” said Dr. Craig Anderson, chairman of Loyola’s pediatric department. “You have 100 patients, you’ve got to have enough revenue to cover their costs. Those of the 100 who have insurance pay for those who don’t.”

Wasn’t cost, some at the Loyola conference table began to argue, as much an ethical consideration as an economic one?

Was it fair to pour unlimited resources into an almost certainly futile effort, while failing to provide basic care to many thousands of children?

Do we have a responsibility to serve as moral agents for the good of society, not just the interests of one family?

Or should we instead ignore the needs of the community and pursue the health care of the individuals at hand?

Is there no moral right or wrong in such cases, beyond what the family wants?

Baffled and divided, the Loyola medical staff decided they needed more information about the twins.

“In these cases you have to run every test known to man,” Dr. George Holcomb, chief of pediatric surgery at Vanderbilt University, had advised Muraskas. So run them they did--everything from CAT scans and MRIs to cardiac catheterizations, arteriograms, angiograms, and pulmonary function assays.

The cardiac catheterization was the most critical of these, for it lets doctors see the anatomy of a heart in detail unavailable on an ultrasound screen. When the cardiac cath films reached Muraskas’ desk July 14, the neonatologist finally, half a year after Reitha first appeared at Loyola’s doorstep, had before him a precise portrait of his patients’ condition.

It was not an encouraging vision. The twins’ shared heart was severely malformed, much more so than doctors had imagined. Instead of the normal four chambers, it had five, and possibly six. The way the blood returned to the heart was abnormal. The way the blood left the heart was abnormal. There was a hole in the bottom of the heart. One twin had a better aorta, the other a better pulmonary artery.

“It was a mess, essentially,” is how Muraskas would later put it. “The plumbing into and out of the heart was all screwy and shared.”

Days later, the pulmonary function test showed that the twins had small, noncompliant lungs, hard to ventilate. To Tom Myers, that meant the babies indeed had a deficient number of air sacs, and scant chance of getting off the ventilator.

By the time the results of the remaining tests arrived on Muraskas’ desk July 21, most of the Loyola medical staff had started to back away from any notion of an operation.

Loyola’s cardiac surgeon now expressed qualms about the need to kill Amy during surgery. Someone else would have to cut the artery, he said. He’d never done something like that. He couldn’t do it.

Loyola’s resident ethicist, David C. Thomasma, cited three reasons for his opposition to surgery: The terrible odds, the misuse of limited health care resources, and the need to kill one of the babies during surgery.

The Loyola cardiologist agreed: “It’s not worth pursuing.”

So did Myers. “By the third week of July, I was certainly of the opinion we shouldn’t do surgery,” he recalled. “We were moving significantly in the direction of saying no to surgery.”

The Lakeberg family, however, was not moving with them. The family, in truth, had not yet been informed by Muraskas that Loyola was shifting its position.

At a meeting with the Lakebergs on July 21, Muraskas still talked about a 20% chance of saving one baby. Sitting in on this meeting, the Rev. Peg Schultz, an ordained United Methodist clergywoman assigned to Loyola’s maternal child care department, grew restless.

Is it really accurate to say 20% chance? she finally inquired. Won’t the babies feel pain? If there have been no survivors past six months, why go through all this? Isn’t this surgery an experiment, rather than treatment?

“Not experimental,” Muraskas responded. “Innovative.”

It was, everyone at Loyola agreed, more difficult for Muraskas to stop fighting for his babies than it was for some. Even he said so.

Maybe, he confided to those close to him, it was because of events in his own life. In 1976, when he was still in college, his mother had been successfully operated on for a big brain tumor. Then, two years later, his father had developed lung and colon cancer. At 22, he’d taken care of his dad for six months, standing by him, giving him morphine and Demerol, finally watching him die in his upstairs bedroom.

The experiences had affected his judgment. When folks like the Lakebergs came along, saying do this for my babies, do that, the memories of his own parents haunted him. Until a year ago, he couldn’t even present to a family the possibility of taking their child off a respirator. His colleagues had worried that he would never be able to.

Myers understood; this was something Muraskas had to work through in the Lakeberg case. “John was not ready to present this decision to the family,” he said. “So we stepped back and let him wrestle with that.”

There is no telling how long Muraskas might have struggled, or in what way he might have resolved the matter, if left to his own instincts. He was not left to his own instincts, however.

Three weeks of cautious private deliberations just then were drawing to an involuntary end. From their windowless hospital meeting rooms, they all--doctors, babies, family--were about to move into a fishbowl. In late July, the news media, tipped off by the Lakeberg family, finally discovered there were 3-week-old conjoined twins at the Loyola Medical Center.

*

The first news story about the Lakeberg twins apparently appeared in the Gary, Ind., Post-Tribune on July 20. The Lakebergs had gone to the newspaper seeking publicity for a July 31 fund-raiser dance scheduled at the Wheatfield, Ind., American Legion hall. They were hoping to raise enough money, they later explained, to cover funeral expenses.

A day later, the Associated Press moved a brief story, followed within hours by the Chicago Tribune. Loyola’s press spokesman, Mike Maggio, assuming the parents wanted privacy, would not confirm their identity. They declined to be interviewed, he said.

The stampede had started, though. Soon reporters from dozens of newspapers were knocking on doors at the homes of the Lakebergs and their relatives in northwest Indiana. Local and national television crews rolled satellite trucks onto unpaved Indiana country roads and the Loyola Medical Center parking lot. The tabloid news shows and syndicated talk shows came calling. Loyola’s public relations office recorded 300 phone messages from media outlets. Whether rising early in the morning or retiring late at night, doctors at Loyola could listen to radio talk shows dissecting their case.

Most news reports cast the Lakebergs as an “ordinary Indiana family” determined to “beat the odds” in the face of a tragic situation. “We thought of an abortion, but once we found out there was a chance, a small percentage of survival, we basically put our faith in that small percentage,” Ken Lakeberg was quoted over and over. “People win the lottery every week. Why can’t we?”

The news media took this last comment figuratively, as a telling example of Ken’s plucky spirit. But some at Loyola thought Ken was talking quite literally.

Vague doubts about Ken had been growing among the hospital medical staff ever since he’d attended his twins’ birth. Where Muraskas saw a “good ol’ boy,” others sensed something a little more dubious.

Three weeks before his babies were delivered, they knew, Ken had failed a random drug test for cocaine, thereby violating the one-year’s probation he’d been given for stabbing his cousin. On June 11, they knew, the Lakebergs had been evicted from their trailer for owing $1,185 in back rent.

After the births, Ken sometimes would disappear for days. Upon returning, he often sounded defensive and full of bombast. In the nursery waiting room, he took to approaching other parents and saying, “See my babies, mine are the Siamese twins.”

“He never seemed to have mature, adult comments,” said Linda Persico, a nurse who tended the babies.

“From the first time I met Ken, at the birth, right away I knew we were heading for the circus,” said the Rev. Schultz. “I knew who he was.”

Virtually everyone at Loyola who dealt with him in time came to question Ken’s motivations. Looking back now, hospital staffers differ only on when they think Lakeberg first realized he could exploit the circumstance of his conjoined twins’ birth.

Based partly on intuition, and partly on their conversations with Reitha, some believe Ken saw an opportunity almost from the start to make money and gain attention. He had raged at the diagnosis of conjoined twins by tearing up the family trailer on Dec. 23, they point out, then had quickly changed his attitude. Someone from the Lakeberg family, in fact, had called newspapers right around then, in late December, tipping them off to the fact that “Siamese twins” would be born the coming summer.

Others, Muraskas included, think Ken’s impulse to exploit the situation arose later, after he began to taste the media attention. “I didn’t pick up early that he planned this for the bucks,” Muraskas said. “I think it grew, like a cancer.”

Whether he’d sought it or stumbled upon it, Ken in late July clearly was enjoying the attention being paid to him and his plight.

Reporters found him available whenever they called or dropped by. Some were invited to join the family for meals. A tabloid television show crew gave them rides from Indiana to Loyola. Ken obliged one television crew by carrying its camcorder into the nursery to tape his babies, something the journalists weren’t allowed to do. One day Ken slipped a photographer into the ward as a family member and let him snap photos.

He didn’t want to give reporters individual interviews, Ken began telling the Loyola nurses; he wanted to give one big press conference interview “like Michael Jordan does.” Responding to a suggestion from Dr. Craig Anderson, the pediatric department chairman, that he “calm down” about the media, Ken said, “Oh no, I’m going on ‘Good Morning, America.’ ”

When donations from all over the country began arriving for the Lakebergs, mailed care of Loyola, Ken appeared to have some trouble restraining his enthusiasm. “Other parents complained in the nursery about Ken ripping open envelopes, tossing them aside, and jamming checks into his pockets, with no record of who or what was sent,” said Myers. “But what could we do?”

Two of Reitha’s siblings--Theresa Hubbell and Michael O’Dor--did try to do something. At some point in July, they opened a trust account for the babies at DeMotte State Bank in Indiana and denied Ken access to it. In response, he went to court seeking a protective order to keep Hubbell and O’Dor away from the babies. He also opened a second trust account that he could control.

Watching all this, the medical staff at Loyola grew amazed at the widening gap between what they knew of the Lakeberg family and how they were being portrayed in the media.

To the Rev. Schultz, Ken was “an angry drug-using opportunist out to cash in.”

To pediatric department chairman Craig Anderson, he was an “opportunistic, manipulative exploiter, out for a buck.”

To the newspapers and TV shows, however, he was a central character in a courageous story about facing down physical affliction--what Myers called an “against-all-odds tale.”

The most galling moment for many at Loyola came on the evening of July 29, when the ABC News show “PrimeTime Live” broadcast a segment featuring the Lakebergs.

The introductory sequence set the tone for what was to follow.

Reitha: “They told me to abort, there was no chance for the babies to live.”

Ken: “They made it feel like we were almost kind of like freaks.”

Diane Sawyer: “Almost everyone told them not to do it, but they followed their hearts. . . . It’s a story that began when these parents heard some terrifying news and decided to dismiss the experts and follow their hearts.”

From there, correspondent Sylvia Chase picked up the narrative and the interview, intercut by views of Ken playing with his 5-year-old daughter, Shervon.

Chase: “You’re broke. You’re approaching a million dollars worth of debt. But it’s worth it to you.”

Ken: “Oh, yeah. . . . You can’t put a price on life.”

“Perhaps the greatest shock to the Lakebergs,” Chase paused to narrate, “has been the explosion of public debate over their very personal choice, the intrusion into their very private pain.” Then she returned to her interview.

Chase: “Do I understand that people have called you and harassed you on the telephone. . . . Why would people hate you for going ahead and making the choice to have the babies?”

Reitha: “I don’t know. I don’t understand it.”

Watching this show, the Loyola medical team felt nothing less than disgust. That the Lakebergs might find a million dollars of someone else’s debt “worth it,” that the Lakebergs might not “understand” the “explosion of public debate” was no surprise. But the “PrimeTime” producers’ disregard for the true story was a revelation.

“We watched Ken come across as a caring and loving parent,” said Anderson, “while all the time we knew something different. Frankly, the picture presented was fraudulent.”

“It was hard to hold my tongue,” Schultz recalled. “I knew the story of the Lakebergs was a fraud, but my neighbors were all so touched and concerned. Some wanted to send in donations, and some did. I was wishing I could warn them, but I kept silent. I let them learn.”

Even Muraskas, who tolerated Ken much better than his colleagues, had to laugh.

“I like the Lakebergs, I get along with them, but this was just not the true story,” he said. “I thought the media looked stupid. No one did their homework. I could have called the media, I could have said this is the most dysfunctional and also media-crazed family. But that’s not my job. I’m a neonatologist, not a politician.”

Clearly, though, something had to be done to stop the snowballing momentum. What the Lakebergs were telling the news media, and what the media were then reporting, just didn’t reflect the complex, difficult situation inside Loyola. Muraskas had to talk to the Lakeberg family. He had to spell out Loyola’s judgment about their babies.

Still, Muraskas hesitated. The media circus at this moment was overwhelming, even scaring him, he would later explain. TV cameras were tracking him across the Loyola parking lot, reporters were calling him at home. It was his license on the line, not his colleagues’. What if he mismanaged the case? What if the family got angry and sued the university?

“John was caught in the middle,” Myers said. “He definitely had pressure from me--I felt surgery didn’t make sense. At the same time, he knew where the family was. He had to bridge the gap. He had to figure out how to deal with this.”

Seeking a resolution, Muraskas turned to James A. O’Neill Jr., surgeon-in-chief at Children’s Hospital in Philadelphia.

O’Neill’s team has separated 10 sets of conjoined twins over the last 30 years, seven of them in the last 15 years, including four sets sharing complexly conjoined hearts. They had not been overwhelmingly successful--none of the twins with shared hearts had survived, and of 16 “operative survivors” overall, six had died later, mainly of cardiac problems. Nevertheless, O’Neill was as much of an expert as there was in this rarefied field.

If O’Neill agreed that surgery was futile, that would make it easier for Muraskas to approach the family. If O’Neill disagreed, Muraskas would have an alternative to offer the Lakebergs.

“FedEx your data,” O’Neill told Muraskas on the phone in late July. “We will help you make your decision.”

Three days passed. O’Neill called, asking for more data, so Muraskas shipped another package overnight. Three more days passed. Finally, O’Neill called one morning in early August.

Surgery would be a long shot, O’Neill said. The chances of survival for one child were remote. He could not encourage surgery.

It was time, Muraskas decided, to visit with the Lakeberg family.

*

A good-sized group crowded into the fifth-floor Loyola Medical Center conference room on the morning of Aug. 4. On one side of a long table sat Reitha and Ken, their daughter, Shervon, and various relatives. Across from them sat Muraskas, the Rev. Schultz, nurse Linda Persico, a social worker and a hospital administrator.

Muraskas chuckled inwardly, looking at Lakeberg. Good ol’ Ken, he thought. In his shorts and undershirt as always.

“The odds are very, very slim, less than we thought earlier,” Muraskas began, speaking more firmly than before. “We believe, and Children’s Hospital agrees, there is less than a 1% chance one child would survive an operation. No one has ever survived this type of operation. Surgery would put the babies through some pain and suffering. We think to put them through this surgery is probably futile.”

He paused, searching for a way to relate this to the Lakebergs. “Succeeding with this would be like bowling three perfect 300 games in a row,” he said.

Schultz leaned forward. She’d been urging Reitha for weeks to let go. Now she tried once more. “The babies came into this world joined together, nibbling each others’ fingers, looking like a little heart,” she said. “Let them go out of the world like that. Let them leave the world as they entered, holding each other.”

Muraskas studied Ken, then Reitha. He felt comfortable now, reinforced by the nurses, the chaplain and the outside consultants.

“Let’s turn off the ventilator,” Muraskas pleaded. “Let’s feed them and keep them warm. Let’s put them in God’s hands. Let’s let them go to heaven.”

Reitha appeared touched; Ken appeared unmoved.

Schultz thought: We’re giving Kenny a heck of a lot of power. How much power should these parents have?

She wished Muraskas would stop talking now. She wished Muraskas would not mention other options.

Muraskas could not do that, however.

Maybe, he thought, it was because he spent more time on the floor in the neo unit than the others, face to face with the babies and their parents. The others talked abstractly while he dealt with human lives. He knew how babies’ deaths affected parents. He had one dad hang himself off a tree limb over his baby’s grave.

Muraskas thought of the photo in his desk drawer that he occasionally showed visitors. In it, the Lakeberg twins were wide-eyed, awake. They looked at you, they followed you. They had different personalities--Amy was the more ornery one. He couldn’t pull the plug on them, not against the family’s wishes. He couldn’t be the one to decide. He had to give the family an option. They had a right to know. They were entitled to it.

“There are other options,” he continued, looking at the Lakebergs. “We can help try to find a place that will do this operation. There is no wrong answer. They are your children. It’s your decision. We won’t be judgmental.”

Usually, Muraskas gets away with this approach--95% of the families he advises follow his recommendation. During the same week he pleaded with the Lakebergs, in fact, he pulled the plug on two babies. One had a bad brain malformation, the other--just 19 ounces--had bled massively into his brain when 1 day old. Both families had agreed to give up.

The Lakebergs did not, however.

A debate still continues over the reasons why the Lakebergs could not be contained at this moment.

The Rev. Schultz, among others, points to an initial overoptimism at Loyola: “If the breaker had been put on earlier in the game, if there’d been less enthusiasm about prospects, perhaps we could have stopped them. But when it got to this point, it had to keep going.”

Muraskas points to the news media: “If I could have gotten all the tests done and figured out a game plan and been able to sit down with the family before the media stuff started, I think maybe I could have convinced them not to do the surgery. But the media became a cancer, an addiction to the family. The media message by then was, ‘Go for the glory.’ ”

Anderson, the pediatrics chairman, points to the legal system: “If you say no to a family, then even one surgeon comes forward and says, ‘I could have operated,’ you’re in a court of law, being sued. We have no recourse when a Ken Lakeberg says, ‘I want this.’ We need the ability to say no.”

Myers points to America’s ethos about health care: “We need general guidelines from society, an assumption that things like CPR and ventilation and ‘hoping against all odds’ are not automatic. Then I would be ready to assume the role of a decider. But such guidelines require us to put the common good above individuals, and we are a society that values individual freedom above all.”

Whoever is right, whatever the mix of reasons, the Lakebergs had now, undeniably, seized control of the medical system.

At the end of the Aug. 4 meeting, the Lakebergs said they would sleep on it. But by that evening, news reports were already quoting Ken as saying they intended to proceed with the separation surgery.

His words were full of hope and daring.

“We’ve got a 1% chance of survival versus nothing,” he told reporters. “I’d rather take the 1%. Why can’t we gain a life here and defy the odds?”

MONDAY: A medical miracle and a father’s fall from grace.