An Hour When Life Stood Still

By Claudia Wallis

For seven months the blond, chubby-cheeked twins ate, slept, cried, had their diapers changed, just like babies everywhere. But they gazed at the world around them from an awkward and virtually immobilizing position. The two were joined at the back of the head, with their faces turned Janus-like in opposite directions. Sitting up or crawling was impossible. By the time they were brought to Johns Hopkins Children's Center in August, they weighed a total of 30 lbs. -- too heavy and clumsy a bundle for their mother to carry easily.

Last week, for the first time in their brief lives, Patrick and Benjamin Binder of Ulm, West Germany, lay in separate cribs. Benjamin rested next to his stuffed dog, Patrick with his teddy bear nearby. They had been parted during an operation of staggering complexity and delicacy -- five months in the planning, 22 hours in the execution, and involving 70 doctors, nurses and technicians. The procedure required draining all the blood from the boys' bodies and completely stopping their heartbeat. At week's end both were in critical but stable condition. Until the babies are roused from drug-induced comas, doctors cannot fully assess their health. "Success in this operation is not just separating the twins," says Dr. Mark Rogers, who coordinated the effort. "Success is producing two normal children."

The Binder twins represent a rare natural anomaly. Siamese twins, who usually die at or before birth, occur in only one out of 100,000 deliveries, the result of an incomplete division of the fertilized egg in forming identical twins. Only one out of every 2 million births produces twins who are joined at the head. Because of the way the Binder babies were attached, their prospects were especially bleak. Without surgical intervention, says Rogers, who is chief of pediatric intensive care, "they would have had to remain bedridden for as long as they lived."

The difficulties of separating them were clear from X rays. The boys had separate brains, but they shared a major vein in the back of the head called the sagittal superior sinus, a large canal through which blood flows toward the heart. Past efforts to separate similarly joined twins had resulted in either death or brain damage. Indeed, one such attempt by doctors in Chicago in 1981 ended tragically with both children bleeding to death on the operating table. Theresia, 20, and Josef Binder, 36, searched in their own country and the U.S. for a medical team that could offer their sons a better prospect.

The surgical plan, initiated by Rogers and Pediatric Neurosurgeon Ben Carson, combined several intricate procedures. To avoid major hemorrhaging in the brains, they proposed to drain the boys' blood supply completely and stop the hearts. To prevent the brains and other organs from starving during this period without blood-borne oxygen and nutrients, metabolic demands would be reduced to a minimum by lowering the babies' body temperature to 68 degrees F, putting them into a state of suspended animation. Because their brains are resilient, children below the age of 18 months have a remarkable capacity to recover from induced hypothermia, which is frequently used in pediatric heart surgery. Even so, doctors figured that once the hearts were stopped, the doctors had no more than one hour to complete the separation and reconstruction before irreparable damage would occur.

Carson agonized over what material to use in constructing separate veins for the boys. Because brain sinuses are structurally different from veins elsewhere in the body, a vessel from the leg or another area would not do. Finally a colleague suggested a novel solution: using part of the pericardium, the membrane that surrounds the heart. "That was a fabulous idea," says Carson. "We knew we were going into the chest anyway. It was right there in front of us saying, 'Take me.' "

The procedure was organized "like a military operation," says Rogers. "We had to plan where 70 people would stand, where to put two bypass machines and all kinds of monitoring equipment." Two operating tables were modified so they would swing apart when the twins were separated. A ten-page play-by-play book detailed each step of the operation. Five rehearsals were held, using life-size dolls attached at the head with Velcro.

, The real thing was scheduled for Labor Day weekend, when no elective surgery was planned. To assure that there would be enough skin to cover the anticipated 5-in. by 6-in. opening at the back of each baby's head, Plastic Surgeon Craig Dufresne had flown to Ulm in the spring and inserted small balloons under their scalp; these were gradually inflated with saline until a growth the size of a small cantaloupe protruded from the babies' skulls.

The operation began as planned at 7:15 a.m. By 9 p.m., the skin and skull had been divided. "We have lift-off," announced Carson as the last of the bone came apart. But the job was more difficult than anticipated. The shared sinus and its surrounding tissue were twisted and corkscrewed, complicating the separation. At 11, circulation was halted, and the critical hour began. By 11:20, the last connection was severed, and the tables were swung apart. "It was a very moving moment," Rogers recalls. "Everyone was silent and astounded." Still, there was much to do before the clock ran out.

When the hearts were restarted with an electrical jolt and blood, warmed in the bypass machines, was recirculated, doctors faced another complication: massive bleeding in each infant's brain. Overall, the surgery consumed 60 pints of blood products, dozens of times the babies' normal volume. Worried about rapid swelling of the brain tissue, the team decided to wait for a later date to install titanium plates custom designed to help close the babies' skulls. In addition, there was not enough scalp to cover both infants' heads; Benjamin's was therefore temporarily closed with surgical mesh.

The team emerged from surgery to the sound of applause all along the hospital corridor. Rogers approached Theresia Binder. "Which child would you like to see first?" he asked. She was speechless.

Hopkins officials estimated that the cost of the operation and subsequent care would eventually total hundreds of thousands of dollars, but all members of the medical team are waiving their fees, and the hospital is absorbing most of the other costs. The twins' hospitalization could last several months. Among the risks they face: blood clots, brain hemorrhaging, seizures and sweeping infection that, according to Rogers, "could kill them in 24 hours." Preliminary tests have shown that both boys can move all four limbs independently and are sensitive to pain. That, doctors noted, was a good omen: it signaled that Patrick's and Benjamin's nervous systems so far seemed intact.

With reporting by Christine Gorman/Baltimore