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Separation Anxiety


The final surgery began smoothly, as Goodrich finished cutting and tying off the remaining veins, but as he peered into the last reaches of the boys’ skulls, he was stunned by what he saw. “The MRIs lied,” Goodrich says. “We got to a [two-centimeter-by-two-centimeter] area where Carl’s and Clarence’s brains were fused together.” Somehow this “tongue” of shared tissue had remained undetected on the imaging studies and in previous surgeries.

For the next two hours, Goodrich and his team anxiously pondered what to do. They eventually found a spot that looked sensible “embryologically”—a place where the twins’ brains might have divided properly had their fetal development been normal—and Goodrich carefully sliced through it. Just like that, the boys had two brains. Applause broke out in the operating room, and Staffenberg briefly left to inform Arlene. “You are now the mother of two separate boys,” he said, clasping her hands. And weeks later, Goodrich and Staffenberg were telling reporters that they’d cleared the high bar they set for themselves: separating craniopagus twins without damaging their brains.

At the 3rd-birthday party for Carl and Clarence, in April, the Elmo cake and Elmo hats and Elmo balloons are in place, a dozen of the boys’ fellow patients at Blythedale are on hand for the festivities, and a clutch of photographers and television cameramen are clustered beside the kiddie table, recording the event for posterity.

The only obvious sign that Carl and Clarence were attached at the top of their heads nine months earlier is their mummy-style bandages (their skulls still need to be reconstructed, a procedure expected to be done this fall). The boys’ curly brown hair spills out around the edges of their gauze head-coverings, and their dark eyes are lively. One of the mundanely exquisite pleasures the Aguirres now get to experience is the joy of looking at each other. After their baths one evening, I watched them clown around. Clarence started it—he shook the metal bars of his crib, then, giggling, shook them again, as if to say, “Hey, bro, get with it.” Carl got on his knees, glanced over at his twin, and gave his crib a good rattle, cracking them both up.

Of doctors who separate twins in a single marathon procedure, Goodrich says, “Why anyone would want to go through with a buzz saw . . . ”

These are the kinds of playful, the-kids-are-all-right details that will be reflected in the next day’s papers. But other realities of the boys’ lives won’t make the news. Arlene is smudging icing on Carl’s and Clarence’s lips, trying to entice them to eat the two fat slices of cake sitting in front of them. The twins didn’t eat well before their separation—being on their backs often made them vomit—and feeding the two of them is still an arduous task for Arlene and the Blythedale staff. Sometimes they manage to feed the boys only a few bites of chicken nuggets or Cheetos or a special pureé. The twins get the vast majority of their calories via portals surgeons placed in their bellies—having Mom hook up the feeding tubes is part of the boys’ nightly bedtime ritual.

Clarence also isn’t responding to Arlene’s efforts to get him to talk for the reporters. “Say ‘hi,’ Clarence. ‘Hi,’ ” she implores. (Carl’s a lost cause; soon, he’s fast asleep, seemingly overwhelmed by the hoopla.) In the months since their final surgery, the boys have made great strides physically, but their speech has barely budged.

Each child has his own speech therapist, his own occupational therapist, and his own physical therapist—most of whom are here, waving and clowning. But as delighted as they are by the boys’ progress, they’re not sure what to make of the speech delay. “Of course I’m concerned they’re not talking more—they’re 3,” speech therapist Rita Erlbaum Kotorac told me earlier. “The more time goes by, the more concerns I have about whether or not they will achieve the same spoken skills as another child.”

Erlbaum Kotorac and everybody else at Blythedale is more reticent than the Montefiore doctors about declaring the boys neurologically unscathed. At the same time, they’re nervous about contradicting the doctors’ upbeat assessment. “It was overwhelming to us that the information being released was that the boys are perfectly normal,” Erlbaum Kotorac says. “At some point, it might look like they’d gotten incompetent therapy: If they had a normal brain, why weren’t we able to help them develop these skills?”

Goodrich says he isn’t worried about the lag. Because he and the other Montefiore doctors suspect the boys’ language deficits might be related to hearing blocks, they put tubes in their ears to relieve pressure and fluid buildup. Plus, he says, “you take eighteen months of social isolation [Carl and Clarence were virtually confined to home in the Philippines], another year to go through surgeries, two different languages—there’s been a lot thrown at these kids.”

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