Twins’ Plight Reflects U.S. Health Debate : Medicine: Doctor who was against Lakeberg babies’ separation stands by decision. He says case raises important issues about reforms.

It is his custom to work late most evenings, but by midday Thursday, Dr. Jonathan Muraskas, 38, a neonatologist at the Loyola University Medical Center near Chicago, found it necessary to flee his hospital.

Angela Lakeberg, the surviving conjoined twin baby separated in a controversial operation last August, had died early that morning at Children’s Hospital of Philadelphia three weeks short of her first birthday. Now some 80 reporters from all over the world wanted to know what Muraskas thought about Angela’s death.

No wonder. As the Lakeberg twins’ doctor for their first seven weeks of life, Muraskas had finally decided that the slim, 1% chance of a successful separation operation wasn’t worth the expense and suffering.

After wrestling for weeks with a microcosm of the current national health debate--when to set priorities, how to allocate resources--he’d overcome his own instincts to always keep fighting. He’d begged the infants’ parents, Ken and Reitha Lakeberg, to let their babies Amy and Angela go to heaven.

But the Lakebergs, inspired by the overwhelming news media attention, grown enchanted by the taste of celebrity and financial rewards, had chosen instead to transfer the babies to Children’s Hospital in Philadelphia. There a team of doctors had been willing to perform the operation Muraskas had discouraged, separating the twins joined at the chest, knowing that Amy would die and Angela would be left with a badly deformed heart and immature lungs.

Watching from Loyola, Muraskas and other doctors had shaken their heads. Despite the ballyhoo over the operation, they didn’t think Angela could survive. Her lungs were just too immature and damaged. They told each other privately that she would never get off her experimental respirator.

Now that prediction had proven true, and reporters wanted to hear Muraskas gloat. He sat still for a handful of interviews before he realized what the journalists were after. Then he bolted from the hospital and stopped answering his phone calls.

“To sit and say ‘Aha, I was right,’ that’s not my style,” he explained. “Listen, we lost a little girl to today. That’s one of the hardest things. I have nothing but respect for the medical people in Philadelphia.”

Angela had been doing well, Muraskas said. The staff in Philadelphia had been weaning her off her special negative pressure iron lung in which she lived. For up to six hours, she was breathing just with an oxygen mask. But her lungs were damaged from all the months of oxygen, and her chest wall was weak from the surgery. Then she developed a virus three weeks ago.

Monday was the beginning of the end. She needed a mechanical respirator and 100% oxygen. She had a fever, and probably pneumonia. Her heart was giving out. Three times they tried to get her back when she went into cardiac arrest. She died at 1:30 a.m., surrounded by medical personnel but no one from her family.

“When they decide to go, they just go,” Muraskas said.

Angela’s bill at Children’s Hospital totaled well over $1 million. Since the Lakebergs are penniless and uninsured, much of the bill will be paid by Medicaid, the rest by “cost-shifting” the burden to other patients who are insured.

Angela’s father, Ken, was transferred Thursday from a drug rehabilitation center to the Jasper County, Ind., jail where he faces auto theft charges. Reitha Lakeberg is living with her parents near Roselawn, Ind.

Despite Angela’s demise, Muraskas sees some benefit from this experience.

“At least it raised issues,” he said. “It taught people to look at the issues about health care.”

His experience with the Lakebergs has also taught Muraskas something about his own practice. For awhile last summer, he’d hesitated to stop trying, he’d hesitated to tell the Lakebergs no, he’d hesitated to take the responsibility of drawing a line. Now he saw the consequences of leaving such decisions entirely to the parents or bureaucrats.

“I would still make the same decision, I would still make the same recommendation,” Muraskas said. “I just might make it sooner, and more firmly.”