Conjoined Twins Posed A Dilemma For Hospitals -- Separating Amy And Angela Prompted Much Soul-Searching

The only mark of a history-making operation six months ago is a scar running the length of Angela Lakeberg's belly.

Angela, born fused to her twin sister, Amy, who died in the landmark operation, now lies in a Philadelphia hospital, encased from the neck down in a glass bubble that helps her breathe. After such an operation, no other baby has lived so long.

How and why the surgery that has kept her alive was performed - against what were portrayed as overwhelming odds - is a tale of two different hospitals, two similar doctors and an agonizing decision-making process.

Little of that turmoil surfaced in the media carnival that broke out around the babies. But in hospital halls away from the media glare, the case drew scores of doctors, nurses, ethicists and chaplains into an intense discussion that evoked a larger debate over how far medicine should push the boundaries of technology, treatment and research.

In the end, Loyola University Medical Center in Maywood, Ill., recommended keeping the twins warm, fed and cuddled until they died. Children's Hospital of Philadelphia operated.

How could two respected hospitals come to opposite conclusions?

Many imagine dispassionate doctors making decisions by scientific method, using sophisticated tests and quantifiable data. Yet interviews with many of those involved in the Lakeberg case reveal that the decisions were influenced by much more - by personalities, religion, even public relations.

At Loyola, nurses said they would refuse to participate in separation surgery on moral grounds. A heart surgeon said he could not intentionally kill a patient. And doctors wondered whether they might be prosecuted for one twin's homicide.

That Angela is alive today is widely considered a miracle. Yet the oft-cited "1 percent odds" of success were meaningless because that particular operation had been tried only nine times before, never at Loyola.

But in Philadelphia, where such surgery had been tried three times before, the lead surgeon believed the odds of success might be as high as 1 in 3. He was more optimistic because doctors there had done a nearly identical operation nine months earlier, and he believed he knew what had gone wrong in that failed procedure.

Media attention unsettled Loyola staff members. For a full month, doctors there tended to the babies in private. But they were uncomfortable with the media spotlight and the possibility of a public failure.

The Lakeberg family became an issue. The hospital staff was angered by the behavior of the father, Ken Lakeberg, who eventually admitted spending donations meant for the babies on drugs. Staff members insisted that their feelings never affected the twins' care. But such concerns did become a medical consideration because doctors questioned whether these parents would be able to provide the demanding special care a surviving baby would require.

Much of the media coverage focused on whether the surgery made economic sense, whether money (now an estimated $1.2 million) devoted to saving one child would have been better spent on preventive health care for thousands of children. But doctors said money never became a key element of the decision-making.

The doctors' personal beliefs, more than their medical views, were pivotal in the decisions.

The two key physicians in the case have been portrayed almost as opponents. But in fact, they worked together, with James O'Neill, Philadelphia's lead surgeon, advising Jon Muraskas, Loyola's neonatologist.

Though they are separated by a generation, O'Neill and Muraskas are more alike than different - both outdoorsmen, churchgoing Catholics and doctors who respect medicine's powers and limits.

Muraskas, 38, emerged from the Lakeberg case as a doctor who declines to push medicine's frontiers. Yet he once pursued care for a baby born weighing 9.9 ounces. Now 4 years old, the child is believed to be the smallest baby to survive infancy.

O'Neill, 60, was cast by some critics as a cold and emotionless physician who pursued a futile operation for the sake of experimentation or personal recognition. Yet he helped one baby's parents remain in this country when authorities threatened to deport them, for instance. He also teaches medical students to abandon treatment when it becomes futile.

The lone philosophical distinction between the two doctors surfaced in the answer to a personal question: What would they have done had these been their babies?

O'Neill said he would have chosen surgery to be assured that everything possible had been done for them. Muraskas, the man Lakeberg family members eventually asked to become Angela's godfather, says he would have chosen abortion or taken the advice he gave in August, to let them die.

"The babies tell us what to do," Muraskas often says.

When a baby fails in the face of treatment, the Loyola neonatologist says to parents, "the baby is telling us he wants to go to heaven."

"Let's keep the baby warm and fed and cuddled until then," he will say. Only once, seven years ago, could he recall parents going against his recommendation.

Then came the Lakebergs.

At 9 a.m. Tuesday, June 29, Amy and Angela Lakeberg were born by Caesarean section, fused in an embrace. In medical terminology: conjoined twins.

Though most conjoined twins are stillborn, Amy and Angela arrived pink, kicking and crying.

Five hours later, they lay near death. Without a respirator, the babies would last only a few hours, Muraskas knew.

In a nearby office, he and a colleague faced off in a debate that foreshadowed confrontations ahead.

"If they really need a respirator, were they destined to make it?" asked Dr. Thomas Myers, 44, the director of neonatology.

Myers did not believe the respirator should be offered. He knew that persuading families to remove a respirator is much more difficult than persuading them not to begin using one.

Muraskas, a twin himself, strongly believed it was too early to give up. "I just can't sit back and let them die," he said.

Since weeks before the birth, Muraskas had been preparing to care for conjoined twins, a birth defect he had seen only once.

Finding evidence of only nine other attempts to separate twins sharing a heart, Muraskas began calling the few experts. "What would you do?" he asked.

"The liver will give you the most problems," said C. Everett Koop, the former U.S. surgeon general. While chief surgeon at Children's Hospital of Philadelphia 16 years earlier, Koop had led an operation on twins who shared a malformed heart. One twin was sacrificed. The other became the longest-term survivor of such a procedure, dying after three months.

Koop's successor in Philadelphia was O'Neill. After five minutes on the phone, Muraskas felt as though he were talking to his own father, a family physician who died in 1978 while his son was a college senior.

The immediate question was whether to test the babies' heart, but Loyola's doctors and nurses had larger questions at a meeting 11 days after the twins' birth.

David Thomasma, chief of Loyola's ethics consult service, asked one: "How many here instinctively feel it's better to try to save one rather than let them both die? Could I have a show of hands?"

Nearly everyone in the room, including Thomasma, raised a hand.

"How can we justify the instinct in terms of moral argument? We can't."

The chance of success was too small to justify the time, the effort, the money and the taking of a life, Thomasma said. And if the parents were still offered the surgery, they should be told it would be experimental.

Cardiac surgeon Serafin DeLeon interrupted. It was not experimental, he said, but innovative.

The debate grew emotional. At one point, the doctor argued that one twin could be considered just an appendage of the other.

How many agreed? Thomasma asked.

This time, no one raised a hand. Nurses and family had found that the twins differed markedly. Amy was ornery and Angela was calm, their mother had said.

"You don't name an appendage," another ethicist said.

Combative as DeLeon was, he confessed doubts. He believed that he could do the surgery; the question was whether he could justify it.

The heart tests proceeded. So did the questions.

Muraskas asked the hospital's risk management department to seek some assurances of immunity from criminal prosecution for one twin's homicide if surgery proceeded.

Twice, the head surgical nurse warned Muraskas to give her ample notice of the surgery. "Listen," Muraskas recalled her saying, "if you plan on separating them, there are not many nurses who are willing to scrub for it."

On July 21, the story that had been unfolding inside Loyola broke, and within days Reitha and Ken Lakeberg were national celebrities.

Months before the babies were born, Muraskas had made it a point to get to know the family facing this tragedy. In January, Reitha Lakeberg had told him of her husband's violence, drug abuse and tendency to disappear on binges for days or weeks.

Many on the hospital staff later came to believe that Ken Lakeberg wanted the surgery for the attention and donations it would bring.

At times, though, Lakeberg was hard to ignore. Using a camera from a TV station, he videotaped the babies in the hospital to provide the station with footage.

Observing this, the chief of the neonatal unit began to question Loyola's longstanding practice of doing whatever parents want for their sick children.

"Do you always honor the parents' desires, even if the motivation doesn't seem appropriate?" Myers wondered.

The family itself became a medical consideration. A surviving twin would likely need oxygen and close, meticulous care.

"Would chain-smoking parents in a trailer park in rural Indiana be the most conducive place for the potential surviving twin?" was the question Muraskas posed in a slide presentation he prepared on the case.

Muraskas was practicing medicine in a fish bowl. Reporters ambushed him at his car. Some nights, as he lay awake mulling over the case, he would turn on the radio for distraction, only to hear talk-show chatter on the subject.

As the weeks wore on, doctors and nurses grew more attached to the twins and more opposed to surgery.

The test results also began to raise serious questions about surgery, indicating severe problems with the heart and lungs.

By early August, all the tests were in, and Muraskas had to make a decision.

The researcher in him wanted to proceed with surgery. But everything else went against it: the lack of surgical success, the severity of the heart's problems, the dysfunctional family, the staff's growing resistance to surgery.

A coming together of many considerations, not any one piece of information, made the decision, he would later say.

At 1 p.m. Aug. 4, the doctor, known among his colleagues for making complex matters understandable to patients, gave the Lakebergs his advice.

About a dozen hospital staff and family members gathered in an office. The staff members had agreed among themselves to talk the family out of surgery.

Muraskas opened the hourlong meeting by explaining how grim the prospects were. One grandmother fled the room, crying.

Let's feed them, hold them, and let God's will be done, he said. Amy and Angela would likely die in a day or two.

Still, he gave the Lakebergs two more options: If they insisted on surgery, he would see whether any of the nation's experts in separating twins would take the babies. If the experts refused, he surely could find some surgeon, somewhere, with a big enough ego to take the case.

Peggy Schultz, the Methodist minister who is Loyola's chaplain, then made an emotional plea.

"Amy and Angela were holding onto each other when they came into the world," she told the family. "When I looked at the girls, I had an image of a heart. They should leave the world just as they came into it . . . holding onto each other, in a heart."

Muraskas learned of the family's decision to seek surgery on the TV news.

"Here we've got a 1 percent chance vs. nothing," Lakeberg would later tell the world. "People win the lottery every week. Can't we win the lottery?

Eleven days and one life-threatening infection passed before the Philadelphia hospital agreed to take the twins, though with no promises to operate.

The next day, Muraskas and the twins flew from one hospital rooftop to another, 738 miles east.

At 7 a.m. Aug. 20, Amy and Angela were wheeled into the Philadelphia operating room, where an 18-member team would try to save Angela, a choice determined by their anatomy.

At Loyola, the prospect of surgery had led some nurses to say they would refuse to participate on moral grounds. In Philadelphia, however, nurses who had assisted in the operation nine months earlier volunteered.

For the next 5 1/2 hours, the surgical team worked quietly, without music and with little discussion, save for instructions related to the task.

First, the surgeons divided the liver. Heart surgery came next. The babies were attached to a heart-lung machine to pump their blood and keep it full of oxygen while the heart was stopped, allowing the surgeons to work.

Surgeons opened the chest. Then blood vessels connecting the heart to Amy were severed, cutting off the blood flow and causing her death.

Then Norwood and another surgeon started the repair.

The task was to make the six-chamber heart function like a normal four-chamber one. To accomplish that, Norwood cut a partition between two upper chambers so they would work as one. He also fashioned a link between two lower chambers with a tube made of the synthetic fabric Goretex. That way, two lower chambers also would work together.

All the while, time was of the essence. Norwood finished in about 45 minutes.

Surgeons gave the heart an electric shock. Angela's heart started right up.

O'Neill's first words to the Lakebergs were, "We're sorry that we couldn't save Amy." The surgery had gone as well as they could have hoped.

What is Angela's future? This, like the wisdom of the operation, remains a matter of debate. O'Neill said he believes she can have a normal life.

Doctors at Loyola believe she has become what they feared the operation would create: a child who may never breathe on her own or leave the hospital.

A few days ago, a smaller, emotional milestone passed. For the first time since the surgery, Reitha Lakeberg held her baby.

----------------------------------------- SIX MONTHS LATER -----------------------------------------

Last Sunday marked the six-month anniversary of the landmark surgery that separated Angela and Amy Lakeberg, twins conjoined at the heart.

Today:

Ken Lakeberg, the father, is serving a year in Indiana state prison for violating probation.

Amy Lakeberg's remains lie under the Indiana hills at the foot of her grandmother's grave.

Angela Lakeberg, who has survived longer than any other baby so separated, remains in the Philadelphia hospital's intensive care unit, where physicians have been trying to wean her from the ventilator she relies on to breathe. The cost of her care thus far is put at $1.2 million. How much higher it may go, no one knows.

Chicago Tribune