What is a "successful separation"?

In her seminal book One of Us: Conjoined Twins and the Future of Normal, Dr. Alice Domurat Dreger argues that all surgical separations of conjoined twins are inherently successful. That is, the surgical team always meets its implicit goal of creating separate bodies out of conjoined ones. It's difficult to fault Dr. Dreger's logic here: separation of twins' bodies often continues even if both twins have died on the table, so that they can be symbolically buried in separate caskets.

But for general media purposes, separation surgeries "succeed" if both children have heartbeats when they leave the operating room and "fails" if both do not. Historically, "failure" has often been attributed to the twins themselves in an effort to compose attractive headlines: "Siamese twins fail op" is more compelling than "Surgical team fails op", and the public is more willing to accept failure from unconscious infants than from men and women with advanced degrees.

Separation surgeries also "succeed" if both children are alive at the time a newspaper article is written. Even if the babies die the following day, an intermittent reader would still have "success" forever imprinted in his or her mind in association with conjoined twins and their separation. We want "success" from our medical professionals, after all. If the children die months or years after the family has receded from the limelight, we may never hear of it.

Part of my goal in putting together this journal is to point out the relationship between "human interest" stories and popular perceptions of people with unusual bodies (to steal Dr. Dreger's phraseology again). When we learn to link "Siamese twins separated" with the adverb "successfully", we have positive associations with these types of surgeries. We begin to think that separating conjoined twins is something that always goes according to plan, and that "successful" surgeries never have disastrous results because they are, after all, successful.

I would also like then, to rework the idea of a successful separation surgery so that survival is not the only criterion for success. I define a successful separation surgery as one in which the twins are better off afterwards than they were before. Twins who are linked only superficially can be successfully separated because their bodies are left fully intact (except for a scar) and they no longer have the perceived disability of being conjoined. Twins who are extensively conjoined at the head typically cannot be successfully separated because the cognitive and motor disabilities they face if separated outweigh the perceived disability of being conjoined. Twins who share a heart cannot be successfully separated because, even though they will die either way, if they are not separated then they will die without having to endure the pain of surgery.

Dr. Dreger says that separation surgeries always succeed because they always fulfill the implicit goal of dividing the twins' bodies. But do they always fulfill the stated goals of the surgery? Older surgeons often gave simply "to give the twins a normal life" as their rationale for attempting surgery. Now that we as a society tend to question the use of a blanket term like "normal", surgeries are often performed "to keep them from being stared at", "to give them privacy", "to give them freedom".

Robert Bellah in his book Habits of the Heart (1985) explains the freedom sought by Americans is "the freedom to be left alone". We associate freedom with aloneness, with "me time". Conjoined twins are an affront to our perception of freedom because they are never alone. One often sees words like "shackles", "bound", "chained" (as in Chained for Life) associated with conjoinment. The surgeons who separate conjoined twins are "cutting them free" or "liberating" them. A body which is never alone is not a body which can contain a free person. Separation surgeries, when they succeed in keeping one or both twins alive, do therefore give the twins freedom vis-a-vis the option of privacy.

However, one might also argue that the increased dependence of separated twins on caretakers, the medical system, insurance companies, physical therapists, artificial limbs, wheelchairs, walkers, respirators, colostomies, protective headgear, et cetera, would negate whatever freedom was gained by the twins in surgery. Ambulatory craniopagus twins are often rendered nonambulatory by the brain damage the sustain in surgery. They go from being non-free because they must compromise and choreograph their daily lives, to being not-free because they must be turned, diapered, and spoon-fed. Why can't Bellah's "freedom to be left alone", then, be the freedom to be left together?

What about the goal of preventing gawking and ridicule? A recent episode of the daytime talk show Tyra featured two sets of conjoined twins and one set of formerly conjoined twins, Kala and Katrina, age 18 (note repetition of the word "normal"):

Kala and Katrina were seniors in high school and living a normal life. Yet, their lives had not always been so normal. In 1988 when both girls were born, they were conjoined at the chest and side and had four arms and three legs. In 1989, when they girls were 11 months old, a surgery was performed to separate them. Theirs was the first successful surgery of its kind in the United States . There were some complications; one of the girls had a kidney collapsed so doctors had to quickly connect the bladder to the kidney to prevent her from bleeding to death. Kala and Katrina were both fitted with a prosthetic leg when they were separated. As they were growing up, many people made fun of them and called them names. With the help of their hero, their mom, Kala and Katrina overcame all of the obstacles. Now the girls are 18 and live a normal life.

Separation surgeries are intended to keep the twins from being stared at and teased. Yet these girls, with their lurching gaits caused by their artificial limbs, were stared at and teased. Another former ischiopagus conjoined twin responded to Kala and Katrina's story that she, too, was stared at and ridiculed as a child. Conjoined twins' bodies are going to be different from other people's, whether they are separated or not. It seems that when separation will produce a lasting disability, as in the case of ischiopagus tripus twins, the stated goal of shielding the children from cruel onlookers is rendered moot.