Congenital heart defect

Amy and Angela Lakeberg were born at Loyola University Medical Center in Maywood, Illinois, on June 29, 1993. The twins were conjoined from the collarbone to the navel, and shared a deformed heart. Their parents, Kenneth and Reitha “Joey” Lakeberg, lived with their five-year-old daughter Shervon in a trailer home inWheatfield, Indiana. In December 1992, earlyin pregnancy, an ultrasound examination had enabled doctors to diagnose that the twins were conjoined and that they likely shared major organs. The doctors recommended an abortion, which the twins’ parents turned down.

After the twins were born, doctors conducted extensive tests and then advised the parents against attempting to separate the twins by surgery. “I told the parents, `Let’s take them off the ventilator. Let’s feed them and keep them warm. Let’s put them inGod’s hands,’“ said Dr. Jonathan Muraskas, the Loyola neonatologist who agonized over his recommendation, knowing full well the twins probably would die in a couple of days if the parents took his advice. They didn’t. They chose to have surgery despite the fact it meant that one of the twins would die on the operating table and the other had less than a one percent chance of surviving.

“It’s like people win the lottery every week,” the father told reporters. “Why can’t we win on life? Why can’t we gain a life here and defy the odds? ” Although Loyola said no to the surgery, surgeons atChildren’s Hospital of Philadelphia said they would give it a try, despite the odds. After the surgery, chief surgeon James O’Neill was asked about the ethics of sacrificingone babytosave another. “There has been a unanimous consensus that if it is possible to save one life, then it is worth doing this,” he said. Five other sets of twins sharing one heart had been treated at the hospital, three requiring similarly intricate surgeries.

Two of the babies whom surgeons tried to save die within hours of surgery. One twin so separated survived for three months. She died of liver failure and infection. Medical literature suggests that any separation surgery is best delayed until the babies are 6 months to 1 year old. Doctors here did not feel that they could wait beyond seven weeks. They feared that the babies’ deformed heart could not pump blood through the twofused bodies much longer. Overwhelming infections pushed the twins close to death twice while they were at Loyola. “Amy or Angela? ” blared the headline in the tabloid Philadelphia Daily News.

“How could you go through with this? ” reporters kept asking Georgia Welsh, Joey Lakeberg’s sister. “They just don’t understand,” a weary Welsh said of those who have criticized the family’s decision. In time, both children would have died without surgery. “If they understood . . . if they had the faith we have in God, they wouldn’t say that,” Welsh said. Physicians determined that Angela’s anatomy gave her the best chance of survival. Early on Friday, August 20, as they told the girls for the last time that they loved them and that God would be with them, the family members saw the first sign of the fateful decision. Amy’s fingernails were bare,

and Angela’s, including a tiny nail on her raised thumb, were painted a pinkish red. In a five-and-a-half hour operation, Dr. John Templeton first divided the girls’ common liver. Then Dr. William Norwood and Dr. Marshall Jacobs restructured the heart and rerouted its blood supply, severing the vital vessels that led to and from Amy’s body. Although a normal heart has four chambers, the Lakeberg girls were born with a six-chambered heart, which included only one left ventricle, the primarypumping chamber. “Theyhad a complex congenital heart defect and unfortunatelyonlyenough substance for Angela interms of the amount of heart tissue,” Dr.

O’Neill said. Dr. W. Hardy Hendren, chief of surgery at Boston’s Children’s Hospital, commented that “when conjoined twins are chest to chest and without two good hearts, it is not unusual tohave to make a choice as to who you’re going to put your marbles on and who you are going to have to sacrifice. ” He said that with most pairs, as in the case of the Lakeberg twins, one child was considerably healthier than the other and had more fully developed organs. He added that bone and tissue from the twin who dies were frequently used to repair defects in the viable baby after the separation. Dr.

Alan Fleischman, chief of neonatology at Montefiore Medical Center, said that if Angela survived to childhood the quality of her life would be good because her brain and other organs are normal. After the surgery, doctors resisted giving any odds on Angela’s recovery, saying each situation is unique. The Lakebergs said in a written statement provided bythe hospital, “It’s a miracle. We would like to thank all those who were involved. ” O’Neill, who headed an 18-member team through the intricacies of separating the twins’ bodies, gave a different assessment. “I don’t honestly think that anything we do in medicine is a miracle,” he said.

“I think it is the product of human effort and human beings. ” Given the poor prognosis for the girls, some health care experts have questioned the wisdom of undertaking this extensive, and expensive, surgery. Including neonatal intensive care, the bill is likely to amount to hundreds of thousands of dollars. But without surgery, twins likeAngela andAmy are certain to die. “You try it because parents can’t accept doing nothing and want totry something even ifit’s not likely to work,” said pediatric surgeon Dr. RobertArensman. Even if Angela survives beyond the first critical weeks, she will have to be supported by high-

tech care for a long time, which could end up costing $1 million or more. The cost of caring for the twins at Loyola before the surgery was about $300,000. The Indiana Medicaid program agreed to pay about $1000 a day for their care at both hospitals. The Lakebergs have no medical insurance. Under a health plan set to start in Oregon in 1994, surgery to separate conjoined twins is not on the list of procedures for which the state’s Medicaid program will pay. “Our primary purpose was to provide universal access tohealth care in Oregon,” said Gwenn Baldwinof the governor’s office.

“How we went about doing that was to acknowledge that we can’t pay for everything for everyone. For $300,000, we could completely immunize 3,000 children. ” Nurses had given the Lakebergs a plaster cast with handprints of the twins. The thumb prints were joined. Two hearts were below; above, one pink bow. A sticker said, “My Child toCherish. ” After the operation, Joey Lakeberg said, “I’mproud of both of mybabies. I just prayed that everything would work out. ” Compiled by Aaron L. Mackler from coverage in the Chicago Tribune and New York Times, August 20-22, 1993.

Amy and Angela Lakeberg were born at Loyola University Medical Center in Maywood, Illinois, on June 29, 1993. The twins were conjoined from the collarbone to the navel, and shared a deformed heart. Their parents, Kenneth and Reitha “Joey” Lakeberg, …

Amy and Angela Lakeberg were born at Loyola University Medical Center in Maywood, Illinois, on June 29, 1993. The twins were conjoined from the collarbone to the navel, and shared a deformed heart. Their parents, Kenneth and Reitha “Joey” Lakeberg, …

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