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."