Doctors separate twins joined at heart One child dies so other may live

August 21, 1993|By Elisabeth Rosenthal | Elisabeth Rosenthal,New York Times News Service

In a feat of surgical wizardry, surgeons at Children's Hospital of Pennsylvania in Philadelphia yesterday separated 7-week-old Siamese twin girls who relied on a common heart. Only rarely have surgeons successfully divided twins who shared this vital organ.

It was a bittersweet triumph since, as had been predicted before surgery, Amy Lakeberg had to give up her life so that sister, Angela, might have a chance to live. Even with the highly technical surgery, doctors thought it unlikely that either twin would live, some putting the odds as low as 1 percent. With the help of some creative surgery, Angela has so far beaten the odds. The next three to five days will be a particularly dangerous period.

"Obviously it is too early to predict with certainty what the outcome will be, but it is encouraging to have come this far," Dr. James A. O'Neill Jr., who headed the team that separated the twins, said in a news conference after the operation.

"At this time, Angela is stable and comfortable, and we hope this will continue. Obviously we are sad that Amy could not continue with her sister."

Although the Lakeberg case has been highly publicized and some have called the corrective surgery unique, experts in pediatric surgery noted that surgeons had previously tried to separate twins who shared a heart and that only a few had made it through surgery and even fewer had survived beyond six months.

Odds against survival

"I hope the best for the little girl, and if she turns out to be a long-term survivor, that would be impressive, but experience has shown that death within the next three to five days is quite likely," said Dr. Robert Arensman, surgeon in chief at the Wyler's Children's Hospital of the University of Chicago. He said he had performed two such operations himself, neither of which resulted in long-term survival.

Dr. W. Hardy Hendren, chief of surgery at Boston's Children's Hospi

tal, said that he had operated on four such twins and that one boy, born in 1988, was still alive. That boy did not share his heart with his twin to the same extent as the Lakeberg girls, making the separation easier.

The Lakeberg twins, born June 29 at Loyola University Medical Center in Lakewood, Ill., shared a single heart with multiple congenital abnormalities, as well as a single liver. They were transferred to Children's Hospital of Pennsylvania in Philadelphia earlier this week after doctors at Loyola advised against the surgery, saying one child would certainly die and the other had only a 1 percent chance of surviving. Some doctors have wondered whether the fact that Loyola was a Catholic hospital might have made doctors there reluctant to undertake a surgery that would have sacrificed one child.

Parents wanted surgery

But the girls' parents, Kenneth and Reitha Lakeberg of Wheatfield, Ill., wanted the surgery performed and Dr. O'Neill's team agreed to try.

In the 5 1/2 -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 seven-chambered heart, which included only one left ventricle, the primary pumping chamber.

"They had a complex congenital heart defect and unfortunately only enough substance for Angela in terms of the amount of heart tissue," Dr. O'Neill said.

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 like Angela and Amy are certain to die.

"You try it because parents can't accept doing nothing and want to try something even if it's not likely to work," Dr. Arensman said.

Dr. Alan Fleischman, a medical ethicist and chief of neonatology at Montefiore Medical Center in New York City said: "The doctors in Philadelphia thought there was a chance, and in that situation I think we have to respect the family's choice for intervention, just as we would have respected their choice if they requested that we stop treatment. If society at some point decides to prioritize and say we won't pay for certain types of medical care, fine, but I don't think we should be rationing at the bedside."

He said that if Angela survived to childhood the quality of her life would be good because her brain and other organs are normal.

About 1 in 100,000 births result in Siamese twins, who may be joined at the head, chest, stomach or bottom. Those joined at the head or at the chest are in general the hardest to separate.

"When conjoined twins are chest to chest and without two good hearts, it is not unusual to have to make a choice as to who you're going to put your marbles on and who you are going to have to sacrifice," Dr. Hendren said.

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.

Not a miracle

When asked at a news conference if the surgery was a miracle, Dr. O'Neill replied: "I don't think anything we do in medicine is a miracle; it is a product of human effort."

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