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Separation Anxiety


When I ask Goodrich if Arlene Aguirre could have halted the proceedings once her boys began to thrive, he doesn’t reply directly. “Every time we sat down to do a surgical consent with Arlene, death, paralysis, and infection were part of the discussion. That’s a decision the parent has to make.” (Arlene tells me she never truly considered not separating her sons. “As a mother, it’s so hard to see your children like that,” she says.)

Dreger doesn’t accuse Goodrich or any other reputable surgeon of hiding the risks of surgery from parents. Rather, she believes medical professionals don’t inform parents fully about what their children’s lives might be like if they were to stay together. They don’t bring up the possibility of aggressive physical therapy and psychological support in lieu of separation, she says. (Practically speaking, this wasn’t an option for Arlene and isn’t for any poor parent. Who would’ve paid for the rehabilitative treatment without the glamorous operation?) “Surgeons tend to be naïve in understanding that there actually have been people who’ve looked like this who’ve done okay,” Dreger says.

Goodrich knows that there are a few sets of twins, head-joined even, who might be said to fit this description. At a Saturday speech and slide show for his colleagues at Montefiore, he showed one pair from his collection, the McCarther twins, born in Los Angeles in the fifties and joined exactly like the Aguirres. “This is their christening photograph,” he says, as a black-and-white picture of two girls in frilly white dresses appears on the screen. “I just bought it off of eBay, so you’re getting the first look.”

“Of course I’m concerned they’re not talking more,” says one of the Aguirres’ speech therapists. “They’re 3.”

Like almost all surgeons who perform craniopagus separations, Goodrich proceeds from the premise that living conjoined is simply untenable. “I just can’t imagine a parent with two kids like that,” he says, breaking off mid-sentence, as if the idea of not separating is too imponderable to utter. The McCarthers learned to walk, like a bridge, and were enrolled in nursing school when they died in their forties, but if Goodrich knows these facts, he isn’t sharing them with the crowd at Montefiore. “This is the way they went through life,” he says, turning to look at the little girls in their white dresses. “What kind of quality of life do you have walking through a mall tilted side by side?”

The country’s—or perhaps the world’s—oldest living craniopagus twins, Lori and Reba Schappell, have an answer for Goodrich—well, more Lori than Reba, because when I call to ask to visit them, Lori informs me that her twin “doesn’t do conjoined stuff.” Reba’s in show business, Lori says, as I imagine her sister listening in. The two are joined at the side of the forehead facing in opposite directions, such that they can’t see each other, and I hear what sounds like Reba whispering. “You know how show-business people are,” Lori picks up. “They can’t do things for free.”

Lori would prefer not to talk for free, either; she asks if I can compensate her for the interview. Jerry Springer and Sally Jesse Raphael, documentaries, magazine interviews—“All this googlie-gah every time a conjoined twin is born or separated,” as Reba later says—this is the modern circus for conjoined twins. I tell Lori that the most I can do is spring for lunch, but she still agrees to meet with me. For the past seventeen years, the sisters have lived, without assistance, in high-rise apartments for the elderly in Reading, Pennsylvania. The 24 years before that they spent in an institution for the mentally retarded, put there by their frightened and confused parents; they were released only after the wife of former Pennsylvania governor Richard Thornburgh helped prove to state officials that they were of normal intelligence. They’re among the conjoined twins who even if born today would likely not be separated because they share a significant portion of brain.

“I’ll be down in a minute,” Lori says when I arrive and call up on my cell phone. Although her sister is definitely coming along, Lori never says “we.”

They appear, Lori’s head crooked down toward Reba, whom she’s pushing on a chair that resembles a rolling bar stool. (Spina bifida has stunted Reba’s growth and left her unable to walk.) I’m nervous, bumbling as we get in the car for the ride to the restaurant. I can’t look both in the eye at the same time, and though they want me to confine my questions to Lori, I can hear Reba’s “Pssst . . . pssst.” When I open the back door, Lori says pleasantly, “I prefer the front.” Oh my, have I insulted them? But how will they fit?

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