THE ULTIMATE CHOICE

By Anastasia Toufexis

At dawn last Friday Reitha and Ken Lakeberg gathered quietly with family and friends in the intensive-care unit of Children's Hospital in Philadelphia. As tears began to well, the Lakebergs made plaster imprints of the tiny hands of their daughters Amy and Angela, then picked them up and hugged and kissed them. Born seven weeks ago, the girls were Siamese twins, joined breast to belly, with a fused liver and a shared heart. As they cuddled the girls, Reitha, 24, and Ken, 26, knew that they would not see Amy!, "the ornery one", alive again. Her finger­nails had been left bare while her sister's had been painted pink by nurses to help doctors easily distinguish the firls. For surgeons would soon try to save Angela by sacrificing Amy. Even Angela had only the slimmest chance - less than 1% -to survive for more than a few weeks. Still, as Ken had plaintively asked one doctor, "people win the lottery every week. Why can't we?"

Before the babies were wheeled into the operating room at 8:05 a.m., Angela made a waving gesture in the air, inspiring her mother to say, "That's right, Angela, thumbs up". The painstaking task of separating the babies was expected to take all day, but after only 5¹/₂hours, the doctors reappeared, and the news was good. «Angela is stable, comfortable and we hope that will continue to be the case».

said Dr.James O'Neill Jr., the lead surgeon. At the same time, relatives were mak­ing funeral preparations for Amy.

No one could know yet if the Lakebergs would ultimately beat the odds and win their painful personal lottery. But it was clear that the couple's ordeal had drawn America into a gripping human and medical drama - and set off a searing ethical debate. Does love demand that parents of a dying child seek any solution, no matter how long the odds of success? Or is it more loving, in some cases, to let nature take its course? Does duty demand that doctors always intervene, or should they set limits? And does it make sense for a society to spend hundreds of thou­sands of dollars on an almost certainly doomed effort while millions of Ameri­cans go begging for the basics of health care?

The Lakebergs' time of hard choices began just before Christmas. About 13 weeks into Reitha's pregnancy, the Wheatfeald, Indiana, couple learned through an ultra-sound test that she was carrying Siamese, or conjoined, twins. Such cases are rare. About 40 such sets of twins - or 1 in 50,000 births - occur in the U.S. each year. Few of the pairs live long enough for separation to be considered. The Lakebergs' doctors had put the likelihood of one twin surviving at no more than 20% and suggested an abortion.

Though the Lakebergs are Catholic, Reitha, a quiet wisp of a woman, calls her decision mostly personal: "In my heart, I couldn't get rid of my babies". On June 29 she gave birth by Caesarean section; Amy and Angela together weighed just over 4 kg.

Doctors soon discovered that even their earlier guarded prognosis had been overly optimistic. The infants' fused liver could be divided, but the twins had one heart. Even worse, it had six chambers instead of the normal four, with a hole in one chamber. The doctors recommended to the Lakebergs that Amy and Angela be allowed to die.

Ken appeared at times to agree. But Reitha was unable or unwilling to accept such an end.

The doctors told the Lakebergs they would try to separate the pair.

When the operation finally began, a team of 18 doctors was on hand. Amy died about two-thirds of the way through the surgery.

Soon after the operation ended, Reitha and Ken visited their surviving daugh­ter. "She looks good", Ken said afterward.

No matter what the outcome, Amy and Angela Lakeberg have become poign­ant - and potent - symbols of one of the most troubling questions regarding health care: Is it morally and medically right to go to such extraordinary lengths when the prospects of success are so small and the financial costs so huge?

The bill for the twins' care, already well above $300,000, promises to soar much higher, and the Lakebergs have no private medical insurance.

Americans respond best not to people in the abstract but to those with names and faces, who smile from magazine covers and cry on television. This time the compassion flowed to the Lakebergs - Reitha, Ken, Amy and Angela. Once their personal plight was known, it became heartbreakingly difficult to say what should have been done.

Date: 2015-12-24; view: 1436