Upon entering the field of medicine, I hope to become a pediatrician. After the class discussion on conjoined twins, I've been asking myself how I would handle these patients in my practice. Would I ask them different kinds of questions during their check-ups, or treat them like every other patient? I wonder, is living as a conjoined twin normal? Looking around at "people on the street" everyone's body holds one individual person. But just because most people are born as one mind, one body doesn't necessarily mean conjoined twins are not normal. It may only appear as strange or abnormal because most people are not born that way. But if conjoined twins occurred say, one in every twenty pregnancies, people in general would not be so shocked and uncomfortable around them. Conjoined twins may be a defect in that the egg didn't completely split, but it's a defect that occurs naturally within the body.
Since conjoined twins are a natural occurrence in terms of being born that way, should they be separated? This debate sparks various opinions. As a physician, I wonder what I would suggest if asked by the twins and/or by the parents what they should do. Would my advice be the same or different for the parents versus twins? After thinking about how I would handle a conjoined twin separation situation, I was answerless. For this Philosophy of Medicine term paper, I've decided to explore conjoined twin separation. Is it ethical or not ethical to separate conjoined twins?
"According to the Oxford English Dictionary (2001), the first citation of 'conjoined' to mean joined together, united, or combined is in 1570...Conjoined twins are so profoundly similar to us and so profoundly different at the same time, explains ethicist Alice Dreger, that our brains do cartwheels" (Quigley 50). Staring is an act people are guilty of, myself probably included, when someone with a deformity or handicap walks by. It has always bothered me that people can look at others and see "freaks," not people. "Despite the fact that these people did not choose to have these bodies – at least not in any simple sense of choice – they are often treated as if they have intentionally violated a social norm, which in a way they have. People avoid meeting their eyes, whisper about them, and act in a way that signals shame" (Dreger 5).
Often times when one has an abnormality, people feel pity and sadness for their condition. What they fail to realize is that these "abnormal" people don't necessarily see themselves as handicapped. "'Pity' is defined as sorrow for another's suffering or misfortune, and that's exactly why it is experienced by many people born with unusual anatomies as not only unsupportive but actively oppressive, for pity implies that the subject must be suffering and unfortunate" (Dreger 5).
I'm afraid I'm one of those people who'd think that a conjoined twin would want to be separated. Imagining myself in that situation, the idea of having another person permanently attached to me seems awful. The lack of privacy would really get to me. But perhaps if you're born that way, you accept that the other person is "a part" of you. For a conjoined twin, having the other person attached is the norm. "Historical anecdotal evidence from conjoinment and other unusual states tells us this: given the opportunity to grow up and decide for themselves, many people with unusual anatomies, including those conjoined, do not choose normalizing surgeries for themselves, at least not at a rate significantly higher than the general population chooses cosmetic surgery. Many people left to grow up with unusual anatomies report being comfortable with their bodies. They consider themselves normal" (Dreger 67).
Look at Abigail and Brittany Hensel whose parents decided to keep them conjoined because they thought separation surgery placed the girls at an unnecessary risk of dying. The parents, Patty and Mike, didn't see the twins as one person, but "as individuals deserving the same support, discipline, and love. They encourage them all to express their individuality in terms of hobbies, clothing, tastes, and friends. As a consequence, the twins are doing very well. They walk, play, go to school, swim, bicycle, draw, learn, and have dreams for the future...By the age of six, Brittany had declared her hope of growing up to be a pilot and Abigail was saying she wanted to be a dentist" (Dreger 37). It's great that Patty and Mike have been so supportive of their daughters.
It seems that Brittany and Abigail are growing up with a strong sense of self, but what happens when they do want to pursue their own career ambitions? At the moment, these two girls want to do extremely different things. And yes these goals may change. When children are little they want to grow up to be a lawyer, pilot, firefighter, doctor, or president of the United States; it's part of being young and not recognizing that there are thousands of other fields available to pursue. But it seems the only way that staying together might work out career wise, is if they ended up choosing the same job path. That way both could be doing what they wanted without having to make any personal sacrifices.
But for the sake of argument, say when the girls are college age they still want to pursue different careers. How will both be fulfilled? Compromises in who they are and what they want will have to be made if they want to stay together. It might be near impossible to pursue their individual hopes and dreams while conjoined. They can't be a pilot and a dentist at the same time. Will they make an arrangement to be a dentist on weekdays and a pilot on the weekend or vice versa? These are realistic questions to be asked. How will they face that situation when it comes time to cross that bridge? Will they stay together or literally go their separate ways?
Not all conjoined twins feel happy and normal together. In 2003, 29-year-old Iranian craniopagious twins Laleh and Laden Bijani underwent surgery to be separated (Thompson 1). They felt that surgery would bring "long sought relief from a situation they began to find intolerable. Intelligent women and attorneys, they were well aware of the technical details of separation surgery. They knew that one or both might die in a surgical attempt to separate them" (Thompson 2). "Laden insisted, 'If our situation goes on [like this] for one or two more years, we wouldn't be able to stand it. We are two completely different individuals stuck to one another, with different world views and lifestyles.' Throughout the drama, the international press reported the women's poetic claim that they just wanted to see each others' faces without a mirror...but it was clear their goal was really to live physically distinct" (Dreger 42). "But they were also quite religious and felt that 'If God wants us to live the rest of our lives as two separate independent individuals, we will', Laden said" (Thompson 2). The Bijani twins died on the operating table due to blood loss.
The fact that the Bijani sisters wanted to be separated is unusual in conjoined twins. "Most people who are conjoined...accept and embrace a life of two minds in one packaging of skin. Indeed, many conjoined twins often explicitly say they do not want ever to be separated, since this would result in a profound change of identity or death of the twin's 'other half.' Imagine having a vibrant, cherished, and articulate part of your body amputated and lost forever, or cut loose to live an independent life" (Dreger 43). According to the Bijani twins, living without the other permanently attached didn't sound like such a bad way of life. To them, living without the other wasn't an amputation, it was freedom.
Is the fact that the Bijani twins died during surgery a religious and spiritual sign the twins were meant to stay conjoined? This is not the only case of separation bringing about religious questioning. "In August of 2000, the first legal case involving the surgical separation of conjoined twins arrived in a British courtroom. The case involved a fundamental dispute about medical care and the separation of conjoined twins, [Mary and Jodie], which divided the scientific, legal, and religious sectors of society. The doctors believed the twins should be separated, giving the stronger, viable twin an opportunity to live. The devoutly religious parents believed that the decision regarding whether the children lived or died should be left in God's hands. In their view no one should intentionally cause the death of another person" (Tierney 1).
The physicians ended up winning the case; the outcome was as expected. Mary died during surgery, but the stronger twin, Jodie, will recover fully. Should doctors have the right to disrespect the parents' ethical and religious reasoning behind keeping the twins conjoined? On the one hand a doctor's sole purpose is to preserve life. Instead of losing both girls, they knew one could be saved. But why not let the girls live as they were born? Who are the physicians to choose which child lives or dies? It's impossible for parents to say one child is more fit to live than the other.
"Medical professionals involved in sacrifice surgeries seek psychological comfort by rationalizing that 'the inherent anatomy is the determining factor' in the decision to end the life of one twin. In other words, they aren't making the decision, nature is...Obviously the doctors decide that one child will die during the surgery, and they are the ones performing what amounts to asphyxiation. As bioethicist George Annas has remarked, the belief that 'objective medical criteria...decide' that one twin will die and one will be saved constitutes a 'fiction that the decision is' an act of God. The decision is clearly an act of men and women – doctors, parents, judges – and not of nature, God, or the children themselves" (Dreger 84-85). Physicians measure survival rates of conjoined twins after the separation operation has been performed. "Separation surgery is considered 'successful' if it is survived by at least one twin. Edge (2000) writes, 'Worldwide, there have been around 200 attempted separations since 1950, three quarters of which have resulted in the survival on one or more babies'" (Quigley 161).
Not all physicians succeed in bullying parents to separate their conjoined twins. In 1984 Marlene and Peter Cady were told that their children needed to be separated in order to ensure the survival of one child instead of losing them both. "Deciding against such a risk, the parents took the girls home and, in view of the bleak medical prognosis, expected them to die within a year. But Verena and Ruthie lived to the age of seven, defying all expectations" (Dreger 33). In this case the parents knew better than the physicians. They couldn't choose one daughter over the other, so they let life take its course. The parents were probably happier knowing they had their daughters for seven years, than having to live with the guilt of valuing one's life over the other.
Although some parents choose not to operate and let nature continue to take its course, not all people are comfortable with that. Some parents fear nonconformity and are scared that their children will be different. Perfectly "normal" children are made fun of by other kids for having glasses or curly hair. Parents imagine the suffering their children may have to endure by being conjoined twins. Parents need to realize that their children are not "freaks of nature." "The word 'freak' is a voluntary sign of nonconformity for some and an intolerable slur for others...In the context of unusual bodies, the word is offensive to some people, but was the preferred term in the amusement industry...until the end of the 1930s" (Quigley 69). I think some parents are terrified that their children will be labeled as a "freak" and their feelings will be hurt. But name-calling is an unavoidable part of growing up. Plenty of children with no visible deformities have been called horrible names. Even though conjoined twins are more obvious in their nonconformity, all children get teased.
This goes along with the parents own insecurities about deviating from the norm. Perhaps they're scared or uncomfortable by having conjoined twins. Their children might impact them socially or cause others to whisper about them. "When a child is born with unusual and potentially stigmatized anatomy, the parents' desire to normalize that child can be especially strong. Most children with unusual anatomies are born to parents who do not share the unusual trait, and so the parents' reaction often involves fear, confusion, shame, guilt, and distress, even while those feelings are tempered by relief, excitement, and joy at the birth" (Dreger 55).
This culture is all about the "quick fix," and some parents figure that a surgery to separate conjoined twins will solve their children's problem. Often-times physicians are only too happy to oblige. "Surgeons and parents may believe that they choose normalizing surgeries purely for the child's own good. Nevertheless, they need to examine the ways in which their own interests – what they stand to gain or lose – may shape their choices...Parents may choose a normalizing procedure because they wish to resolve their own identity crises. And surgeons have quite a lot to gain by pursuing separations: professional and public renown, the approval of their institutions (which often benefit from the positive publicity), and the gratitude of patients' families" (Dreger 75).
In the future, will conjoined twins continue to be in our society at all? Despite the chances that having conjoined twins is microscopically small, in the future, it will be far less. With the advancement of technology, many women who know their children will be conjoined will have an abortion. "Today, termination of a pregnancy (therapeutic abortion) may be offered, when an anomaly is present. Many families decline to abort conjoined twins, whether or not it is believed that they can be surgically separated. Other families do not have a choice, in cases where a pregnancy is spontaneously aborted or in cases where the baby is non-viable" (Quigley 7).
Social identity is breaking through to the forefront of our culture and will continue to do so as time goes on. Look at how many magazines contain articles on, "How to lose 10 pounds in 10 days," and millions of people buy into it. What people see on television and in movies influences them on how they want to look. Look at all the advertisements on television there are for male enhancement performance drugs alone.
"In the United States, the values of individualism, self-improvement, free enterprise, and high-tech medicine have combined in the past few decades to create a culture in which one is able--indeed, even expected--to employ medical technologies to alter one's anatomy and make it more socially advantageous. The same trend can be seen in reproductive technologies, where genetic screening, prenatal testing (including blood tests and sonograms), selective abortion, and pre-implantation embryo selection are now routinely employed by prospective parents, who are given the technological and social encouragement to avoid having children who might present socially challenging anatomies" (Dreger 143). With parents wanting to pick and choose characteristics of their child in order to "normalize" them and make them socially acceptable, conjoined twins won't fit into this "perfect" new world.
After having examined many different aspects and concerns with separating conjoined twins, I'm still not sure what I'd recommend to my patient as a physician. There are so many ethical aspects to consider in separating conjoined twins. As an aspiring pediatrician looking at the various sides of the issue from the patient, parent, and physician's perspective, no "right" medical or ethical decision stands out on how to handle this controversial situation. Everyone is different and each person has their own belief system. One family might believe that separating their children and risking a "sacrifice separation" is the right action to take. Another family might want to keep their children conjoined, but the twins themselves might want to be separated. There is no clear cut answer to who's ethically right and who's ethically wrong.
The way to treat conjoined twins is to be sensitive to what they want because there is no correct choice. The physician should only act as an unbiased guide and be aware of the patients' and their parents' feelings toward surgical separation. As a pediatrician I will be informative of what the risks of staying a conjoined twin are, as well as having separation surgery. I will be sure to present all sides of this issue. I will sit with everyone and make sure that they have taken their time in thinking about all positives, negatives, risks and so on with separating conjoined twins. Whatever my patients decide as the best choice for themselves, I will be supportive.
WORKS CITED
Dreger, Alice Domurat. One of Us. Cambridge, Massachusetts: Harvard University Press, 2004.
Quigley, Christine. Conjoined Twins. London: McFarland & Company, Inc., 2003.
Thompson, Richard E. "The Legacy of Ladan and Laleh." Physician Executive: p.52(3), Sept.-Oct. 2003.
Tierney, Heather. "Conjoined Twins: The conflict between parents and the courts over the medical treatment of children." Denver Journal of International Law and Policy: p.458(18), Fall 2002.