Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: FRIDAY, August 20, 1993 TAG: 9308200132
SECTION: NATIONAL/INTERNATIONAL PAGE: A-1 EDITION: METRO
SOURCE: STACY BURLING and CYNTHIA MAYER KNIGHT-RIDDER/TRIBUNE
DATELINE: LENGTH: Long
The conjoined twins, Amy and Angela Lakeberg of Wheatfield, Ind., share one malformed heart and fused livers.
Wednesday night the girls' parents made what was probably the hardest decision of their lives: to proceed with surgery to separate the twins, despite what the hospital called "extremely remote" odds that either will survive.
Dr. Johathan Muraskas has been through every wrenching minute of this before.
As a neonatologist at Loyola University Medical Center in Maywood, Ill., where the twins had been patients since their birth June 29, he struggled for months with the complex ethical questions.
His decision not to intervene surgically is what brought the babies and their mother, Reitha "Joey" Lakeberg, to Philadelphia on Tuesday. She hoped doctors at Children's would see things differently.
Muraskas had met Joey Lakeberg and her husband, Kenneth, in December when she was 16 weeks pregnant. Two weeks earlier, an ultrasound test had revealed the 24-year-old homemaker was carrying twins joined at the chest.
Even in December, Muraskas told the Lakebergs their babies' chances of survival were "pretty dismal."
Muraskas, a Catholic who attends church weekly, and the couple's obstetricians recommended an abortion. Because Loyola is a Catholic hospital, an abortion would have to be performed elsewhere.
The Lakebergs, also Catholic, decided to keep the babies.
Their case has since become something of a cause celebre, partly because they have been willing to discuss their plight on television.
They have appeared on "20/20," "Prime Time Live," "Good Morning, America" and "A Current Affair."
The media attention thrust the Loyola doctors into an unwelcome spotlight, Muraskas said. Now it is causing a deluge of media calls to the Philadelphia hospital as well. "It's almost like the whole world's watching you, and it's hard to do your work," said Muraskas. "It's been a real strain."
The twins were born by caesarean section in the 37th week of pregnancy, late enough that they were not considered premature.
Amy and Angela were placed on a ventilator, which pumped slightly richer-than-normal air into their tiny lungs.
They had just about every test imaginable: a CAT scan, an MRI, angiograms and arteriograms, a cardiac catheterization and pulmonary function test.
Doctors learned their livers were fused, but Muraskas believes the livers could be separated successfully.
Their shared heart is another matter.
It has four full chambers and a rudimentary fifth. A normal heart has four chambers. The plumbing system into and out of the heart is also abnormal and very complicated, Muraskas said.
"It's such a complex heart," he said. "The way the blood is returning to the heart is abnormal. The way the blood is leaving the heart is abnormal. There's a hole in the bottom of the heart."
It's not clear which twin has the better chance of survival. "One twin has a better pulmonary artery," Muraskas said. "The other has a better aorta."
Muraskas concluded that the babies would die without surgery, and that even with surgery one of them - the one that didn't get the heart - would die and the other would have only a minuscule chance of survival.
When Muraskas shared what he had learned with doctors at Children's, they essentially agreed. They told him even the infant who got the heart would have only a 1 percent chance of survival. Muraskas learned that no baby sharing a heart with a twin had lived more than a few months after separation.
It was clear to Muraskas what should be done. Nothing.
"We sort of pleaded with them to take them off the ventilator," Muraskas said. "Let's feed them and keep them warm," he told the family. "Let's put them in God's hands, so to speak."
He also told the parents that surgery would be "putting them through some suffering and pain."
The parents decided instead to take the chance, tiny as it was.
The surgery is scheduled today. In a news conference Thursday, doctors provided few details about it. "I wouldn't use the word optimistic," said Dr. James A. O'Neill Jr., chief surgeon at Children's. But, "If we felt there was no reasonable chance at all . . . we would not have offered the family this option."
They plan to separate the lower part of the chest cavity first, then turn attention to the heart.
"People win the lottery every week," Kenneth Lakeberg, a 26-year-old welder, had earlier told Muraskas. "Why can't we?"
Muraskas still feels comfortable with his recommendation to the Lakebergs. He is used to dealing with death. He has taken two babies off ventilators this week alone.
"I always say to the parents, `I don't make life and death decisions. The babies tell me what to do.' "
In this case, he said, "our primary concern then and now is what's best for the babies. There's really no ethics involved because it really looks like both babies are going to die." But he respects the Lakebergs' desire to fight for one baby's life.
"It's their children," he said. "There's no wrong answer."
by CNB