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- August 26, 2002
- Vol. 58
- No. 9
Conjoined at Birth, Twins Maria Teresa and Maria De Jesus Alvarez Have Won An Amazing Chance to Grow Up Together, Apart
But it would be three days before Alvarez, sedated and recovering from her ordeal, would even get to see them. And when she did, she was consumed with fear. "I thought they would die," she says. Weighing little more than 4 lbs. each, the babies were pretty and bright-eyed with thick black hair. They were also conjoined, fused together at the top of the head. "I was shocked," Lopez, a banana plantation worker, says. "I thought, 'Why did this happen to us?' But I had to accept it—they were my daughters."
It was the start of a remarkable odyssey that would take the two Marias, as the girls have come to be known, far from their Central American homeland to the high-tech world of the UCLA Medical Center. There, on Aug. 6, they were separated, after a 22-hour operation in which doctors carefully divided and rerouted the twins' intricate web of shared blood vessels. It was white-knuckle surgery that, if done improperly, can cause stroke, brain damage, blindness or death and has only been performed on seven other sets of similarly conjoined twins before. Arranged by Healing the Children, a Spokane, Wash.-based charity, the procedure cost $1.5 million in donated manpower, supplies and facilities. "So many people came together to make it happen," says Cris Embleton, 57, a cofounder of the organization. "If they hadn't, the lives of these little girls would probably be a nightmare."
The babies are still in critical condition and face at least a month of recuperation, plus reconstructive surgery on their skulls, before doctors can assess whether the girls have suffered brain damage. At the very least, the girls may experience some motor weakness in the hands or extremities, according to their neurosurgeon Dr. Jorge Lazareff. Maria Teresa, who spent another five hours on the operating table to relieve the buildup of blood on her brain, has lagged slightly behind her sister. But after a week both were regaining consciousness and sluggishly moving their limbs for the first time as unfettered individuals. Maria de Jesus has been taken off a ventilator and is breathing normally; Maria Teresa is expected to follow soon. "Every day we're more hopeful they will recover and live healthy lives," says Lazareff.
If so, they would overcome staggering odds. Known as "craniopagus" twins, babies joined at the head occur only about once in every 2.5 million live births, accounting for a mere 2 percent of all conjoined twins, and most die in infancy. If the Guatemalan twins survive without major disabilities, it will have much to do with luck. "Most of these twins share brain tissue," says Dr. Marion Walker, a Salt Lake City neurosurgeon and an expert on separations. The Marias, however, appear to have had only blood vessels and bone in common. "The Guatemalan girls," Walker adds, "were very fortunate."
To be sure, the twins seem to have snuggled under the wing of a guardian angel. After their birth, quick-thinking doctors may have saved the girls' lives by transferring them from the primitive rural clinic to Social Security Hospital in Guatemala City, where they would stay for nearly a year. There they received the best care possible in their small country, though it entailed another, perhaps more wrenching form of separation: For several months after her grueling labor, Alvarez was still too weak to join her children, and Lopez—who earns $800 a year bagging bananas—could only afford to make the five-hour bus journey from Belén to the national capital once a month.
In their absence, hospital staff doted on the little girls. Dressed by nurses in brightly colored frocks, the babies displayed personalities as disparate as fire and ice. Bigger and bubblier Maria Teresa charmed strangers with a mischievous grin, while small, reserved Maria de Jesus possessed a doe-like serenity. Says one nurse: "You couldn't help but be affected by them."
As the Marias' health improved, hospital officials contacted Healing the Children, which has brought more than 6,000 sick children from the Third World to North America for medical care. "These kids were so loved," says Naomi Bronstein, 57, a Canadian who cofounded the group with Embleton and Spokane adoption specialist Maureen O'Keefe, 53, in 1979. "They had become national treasures."
By June the charity had joined forces with Lazareff, 49, director of pediatric neurosurgery at UCLA's Mattel Children's Hospital, who traveled to Guatemala to meet the girls. "They smiled," he says, "and my first thought was that we have to do something so they can be two independent human beings." Their parents agreed. "They asked us, 'Can you help?' " says the surgeon. "They understood what needed to be done."
Lazareff lobbied his hospital to take the case, and on June 27 the girls and their mother were flown to Los Angeles on a private jet provided by an anonymous donor (Lopez, whose visa was delayed, joined the family five weeks later). During the ride Bronstein and Embleton used mirrors to let the little girls see each other's faces for the first time. "They were mesmerized," says Bronstein. The girls adapted well to America, smiling at nurses from a makeshift bed fashioned from two cribs taped together and jabbering their few words, such as "mama" and "agua." But for their mother, who speaks a Mayan dialect, some Spanish and no English, the culture shock was intense—she seldom left the cot by her daughters' crib. "She was tense and worried," says Lopez. "We were waiting for a miracle."
On the morning of Mon., Aug. 5, their patience was rewarded. The twins were wheeled into the hospital OR. Lopez, who had attended a Catholic mass with his wife the evening before, grasped Maria Teresa's tiny hand. "She said 'Bye-bye,' " he recalls, "and they both waved their hands." Expected to last 10 hours, the operation stretched to more than double that length. "We took our time because we wanted to be very careful and very sure we made no mistakes," Lazareff explains. At one point Maria Teresa began unexpectedly losing blood, forcing the anesthesia team to give her transfusions throughout the procedure. At 11:52 p.m. surgeons cut the last piece of bone holding the girls together, then meticulously covered their exposed brains with skin. At 3 a.m. Tuesday, Embleton, who stood vigil in the hospital with Bronstein and the twins' parents, received the good news from an exhausted Lazareff. "I told him, 'You did a good job, my friend,' " she says. "And he said, 'No, we did a good job,' meaning the medical team."
Although he'll have a firmer sense of their prognosis as the twins regain full consciousness, Lazareff is upbeat about his young charges, who are eventually expected to return to Guatemala, where they will receive follow-up care. "I'm absolutely positive that in five years they will be living normal lives as separate and precious individuals," he says. About this, the mother who fought so hard to bring them into the world has no doubts. "I put my faith in God," says Alba Alvarez, "and God answered my prayers."
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- Ron Arias.
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