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Separation Anxiety

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This April in New Orleans, Goodrich gets the chance to present the crowning accomplishment of his career to his peers, the more than 4,000 members of the American Association of Neurological Surgeons. It’s the organization’s annual meeting, and after Goodrich gives a short lecture, Dale Swift, one of the neurosurgeons who separated the Egyptian twins in Dallas, rises to comment as the predesignated “discussant.” Swift trained under Goodrich twenty years ago, and now the student is critiquing the teacher. “It’s very hard to argue with success,” Swift begins, and staging surgery to redirect blood flow definitely “makes sense.” But then he proceeds to tick off reasons why it’s not always such a hot idea, the main one being the risk of infection incurred by performing multiple operations.

Goodrich can only smile tightly during the meeting—there’s no chance for debate—but later, he doesn’t hold back. “Did we have an infection?” he demands. “To me, if it takes four operations to get a good neurological outcome, that’s what you do. Infection can be treated. Brain can’t be regenerated.” Look at the Guatemalan girls, Goodrich says, referring to María Teresa and María de Jesús Quiej Alvarez, whose 2002 operation in Los Angeles is the other recent marquee separation of craniopagus twins in the U.S. They were taken apart in one stage, and look what happened to them: At age 4, María Teresa is severely retarded, deaf, and can’t move her arms and legs, likely owing to meningitis contracted through the head wound left by the separation; María de Jesús has adequate mental function but is badly physically disabled.

Back to the Egyptians, who are now almost 41ž2. Goodrich is emphatic that they suffered brain damage and his kids didn’t. The Dallas doctors concede this—sort of, Swift more so than the leader of the team, plastic surgeon Kenneth Salyer. “The boys are walking, speaking Arabic, English, and a little Spanish, and are absolutely delightful and fantastic,” Salyer says. I note that Goodrich says he’s performed the only craniopagus separation without causing brain damage. “Each of our children has a hemiparesis [partial paralysis],” Salyer says, “but that was anticipated as part of the operation. It wasn’t a complication.”

Goodrich can hardly stand it. “Ken Salyer is the ultimate showman. He’s been on Oprah Winfrey, twice. The time he brought the two boys, they sat in the laps of both parents, laid there. Neither kid got up. Neither kid did anything.” (This is basically an accurate description of the show, though it was aired in October 2004, six months before I asked about Mohamed’s and Ahmed’s progress.)

What about Ben Carson’s twins? Carson, who’s African-American, has an even better backstory than Goodrich: He went from the Detroit ghetto to Yale to med school at the University of Michigan, and today he writes books, gives inspirational speeches, and runs a foundation that grants scholarships to high-achieving needy kids. When he comes to New York to accept an award for his charitable work, I inquire about the Zambian boys. “They’re in third grade, walking, talking, neurologically intact, not having seizures,” he says. Cognitively, he says, “they’re at grade level.” Has he heard what Goodrich is claiming? I ask. “That doesn’t bother me,” he says. “When things are done in Third World countries, it doesn’t get the same attention.”

Carson hasn’t published his case in a medical journal, he says, because his fellow surgeon in South Africa, Sam Mokgokong, wanted to do it but hasn’t. “I’m seriously thinking about just going ahead and doing it myself,” he says. I tried to reach Mokgokong several times, and while I got one response from his assistant indicating he’d be willing to comment, I never heard from him.

Because of the devastating outcomes of many separations, there are people who believe surgery is too automatic. One of them is Northwestern University bioethicist Alice Dreger. In her 2004 book, One of Us: Conjoined Twins and the Future of Normal, she argues that the glory separations bestow on surgeons and hospitals can make it hard for doctors to resist the cases. She writes about one doctor who, “envious of a longtime rival’s sudden fame,” went “shopping” for a set of twins to separate.

Goodrich’s response is simple: Without separation, the Aguirres would’ve died. What he means, exactly, is that had the Aguirres never left the Philippines, had they never received medical care at Montefiore and Blythedale, including the first few stages of separation that helped take the strain off Clarence’s heart, they probably would have died. But he acknowledges that “by the time they got to the fourth stage, their physiological health was superb.” He also says that according to the data he gathered, craniopagus twins who survive to age 2 have a 50-50 chance of making it to age 10. Those aren’t exactly terrific odds, but they do cast a different light on the risk-benefit ratio of such a dangerous surgery.


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