Thesis: With such a large number of ethical and moral dilemmas related to conjoined twin separation, each case needs to be looked at individually.

Outline:

I. Intro

II. General information about conjoined twins
A. Developmental process
B. Percentage of conjoined twins
C. Types of conjoined twins

III. Conjoined twins today in and in the past: Case studies
A. Chang and Eng Bunker
B. Abigail and Brittany Hensel
C. Amy and Angela Lakeberg
D. Mary and Jodie

IV. Moral and ethical dilemmas

V. Conclusion
 

Intro

Conjoined twins are a rare form of identical twinning; one that carries many challenges with it, to affected twins and their families. From the time of birth conjoined twins must struggle to survive against physical and psychological difficulties. With the premium that current culture places on independence and individuality, conjoined twins fight to find their place in society, meanwhile demonstrating coexistence at the extreme. Parents and physicians are usually ultimately the responsible parties for deciding if this coexistence will continue. As will be discussed, the decision whether or not to separate conjoined twins remains tangled up in a web of argumentation, a debate that even the twins themselves may not be able to answer.
 

General Information about Conjoined Twins

Coined "Siamese twinning" after the birth of Chang and Eng in 1811 in Siam (who incidentally, were born to Chinese parents, not Siamese), conjoined twinning is the appropriate medical term for identical twins that are physically connected (Grosz, 1996). This condition is the result of a delay in the division of a single fertilized ovum. Most monozygotic (identical) twins form as a result of a split in the blastula between the 4th and 8th day after fertilization. These twins will share the same chorion but have separate amnions. Occasionally the spilt occurs after the 8th day and before the 13th day, creating twins that share the same chorion and amnion. However, if the split takes place after the 13th day when the embryonic disk has already begun to differentiate, the twins will share body parts in addition to sharing a chorion and amnion (Haaga, 2000). Studies have shown that conjoined twins have a much higher incidence of situs inverses (a physical reversal of internal organs such as the heart or liver) than normal identical twins or singletons, supporting one-egg origin (Segal, 1999). The exact cause of the delay in division is not known. Genetic and environmental conditions do not appear to play a role in the development of conjoined twins.
Conjoined twins have been reported as twins in triplet and quadruplet sets, made feasible due to the fact that some zygotic divisions may occur later than others. There are, however, no documented cases of conjoined triplets or quadruplets (Gilbert, 1998). Interestingly, 70% of conjoined twins are female, although monozygotic twins are more often male than female (Haaga, 2000). The root of this sex difference is uncertain, but possible explanations include increased male vulnerability to trauma, higher occurrence of delayed splitting in female zygotes, or because of the greater number of males born as Turner Syndrome females (Segal, 1999).
The notoriety of conjoined twins is furthered by their low birth incidence. Conjoined twinning occurs as often as once in every 40,000 births, but only once in every 200,000 live births (Gilbert, 1998). Even for those vigorous twins who make it past birth alive, only 65% survive past day one. The still bleaker newborn survival rate fluctuates between 5% and 25% (Segal, 1999). Only an estimated 300 conjoined twins in all of recorded history have lived past a few months of age (Grosz, 1996).
Considering that conjoined twins represent only a fraction of the world's population, it is astonishing how many types and subtypes of twin pairs there are. On the most basic level, conjoined twins are classified in one of two subgroups. Diplopagus (equal and symmetrical) conjoined twins display equivalent or nearly equivalent duplicate features, so both twins are complete individuals (Segal, 1999). Chang and Eng Bunker illustrated this type of twinning, joined only at the chest by a band of tissue. The other subgroup, heteropagus (unequal and symmetrical) conjoined twins, is represented by unequal duplication of features with various degrees of development. Examples of unequal and symmetrical twinning are parasitic twins (for instance, a partially developed twin, such as arms or a head and arms, attached to the stomach area of a normal twin) and fetus-in-fetu (an abnormal fetus located inside another individual's body). Heteropagus conjoined twins are relatively rare, representing less than 10% of all conjoined twin cases (Segal, 1999).
More specifically, conjoined twins are classified by the point at which they are joined. These terms frequently end in the suffix "-pagus", meaning "fastened" in Greek. As many as three dozen separate types of conjoined twins have been identified in the last century. Some of these types will now be briefly mentioned. Thoracopagus twins share part of the chest wall, 90% of the time including joint possession of one heart (Haaga, 2000). This is the most common form of conjoined twins, representing about 35% of all cases. Craniopagus union makes up about 2% of all cases, exhibited by twins joined only the top of the head. Ischiopagus twins are connected by inferior margins of the coccyx and sacrum, occurring in 6% of all cases. About 30% of all twin pairs are Omphalopagus twins. They are united from waist to lower breastbone. Pygopagus twins, who are positioned nearly back to back, share a coccyx and sacrum and make up about 19% of all conjoined twin cases (Gilbert, 1998).
Their bodies permanently unified together, conjoined twins classically have led lives of social avoidance or on public display as freaks of nature. The Bunker twins, Chang and Eng, left their parents after being discovered by a merchant, to tour the United States and Europe billed as "The Siamese Double Boys" (Beardsley). They visited many famous venues, met members of England's royal family, and were examined by dozens of doctors, including those at Harvard, who tried to determine the true nature of their connection. The brothers married two English sisters when they were 42. With the growth of their families (in total they fathered 22 children), they built two separate houses and spent half of the week with each family (Grosz, 1999). For Chang and Eng who were connected at the lower chest by a thin band of flesh through which their livers were joined, surgical separation was deemed impossible. Doctors thought that separation would endanger the lives of both brothers. The thought of separation often dispirited the twins, making them cry. This is an important point to notice, especially in the culture of today where an unfeasible separation of conjoined twins is considered a tragedy. The wishes and feelings of conjoined twins may not always be congruent with those around them.
Conjoined twins may struggle with their situation, but they do not struggle alone. Americans are embodied in their own challenge as they try to work with the tensions that surround conjoined twins. Society is forced to examine what really constitutes an individual. Should identical twins be allowed to remain submerged in a relationship so close that any trace of singularity is lost? Are they one or two? It is clear that they are different individuals in the sense that their preferences, personalities, and styles are different. Yet in addition to the blurred physical distinction between the two twins, experiences, speech patterns, and even sentences are shared.
Anymore, there are normally only two possible fates for conjoined twins. The first is surgical separation, which is often linked with dangers imposed on the physical and emotional well being of the twins. The alternative option is to let the twins keep the body they were born with, frequently leading them to a life in isolation from society or in the spotlight of the media. Looking to care for the lives of these children leads to a number of ethical and moral dilemmas. The problems associated with caring for conjoined twins can sometimes be perplexing and complicated. Questions often arise in terms of medical and clinical uncertainty, the role of the family and doctors in making decisions for impaired newborns, and also relating to issues of social justice.  In the next section, the lives of several sets of conjoined twins born in the last decade will be examined.

Conjoined Twins Today and in the Past: Case Studies

Abigail and Brittany Hensel are sisters with separate personalities, opinions, preferences, and goals. Born in 1990 as dicephalic conjoined twins, they have separate heads, necks, hearts, spinal cords, and stomachs, but they share one two-legged body. Abby dreams of being a dentist whereas Brittany wants to fly planes (Wallis, 1996). If one of the twins gets an ear infection, the other twin can take the medicine for her sister. Despite their condition, they run around, ride bike, go shopping, and attend school much like other girls their age do.
Mike and Patty Hensel, the parents of Abby and Britty, immediately dismissed the idea of separating their daughters when they found out that the chance of both girls surviving the procedure was very slim. "How could you pick between the two?" argued Mike (Wallis, 1996). If Brittany and Abby had been separated and survived the surgery, they would probably be hobbling around on prosthetic legs, and adapting to their artificial arms rather than running about and riding bike. It would have been making invalids out of individuals who are mobile (Wallis, 1996). Wallis adds, "Their smiling faces and apparent good health seem a rebuke to the current medical trend of trying to separate, via surgery, ever more complexly conjoined twins-a trend that often means sacrificing one child so the other can live 'normally'" (1996). The doctors agreed with the Hensels' choice not to have their daughters separated. Abby and Brittany now second that.
The Lakeberg twins, Amy and Angela, thorocopagus conjoined twins born in 1993 in Chicago, shared a complex six-chambered heart and one liver. Eleven days after birth the twins were still ventilator dependent (Thomasma et. al, 1996). The doctors decided that even if the girls were separated, neither of them would ever live off a respirator and oxygen. The quality of life in this case might arguably be worse than death. The ethics consultation team at Loyola advocated against separating Amy and Angela for several reasons. First of all, the medical data indicated that according to past separations of twins of this type, there was no chance of the surviving twin leaving the hospital alive. Not only was it likely that the "surviving" twin would die, but the other twin would be sacrificed for the surviving twin, violating the rule against killing. The only way this rule would have not been violated would have been for the one twin to have a much higher likelihood of surviving than what it was estimated at. Thirdly, social justice requires that resources, time, and professional energy be devoted to better outcomes (Thomasma et.al, 1996). The physicians at Loyola joined hands with the ethical committee, advising against surgery.
Despite the recommendations of the ethics consultation team and the physicians at Loyola, the parents were adamant that their daughters be separated. The twins' mother felt that she, "could not live with herself if she did at least try to save one life"(Thomasma et. al, 1996). Surgeons at the Children's Hospital of Philadelphia agreed to perform the operation, even though Amy would be intentionally sacrificed and Angela was given only a 25% chance of survival (of the procedure alone). Not quite twelve months after the surgery Angela, who was still on negative pressure ventilation (like an iron lung), died. During Angela's short life her mother was only able to visit her three times. Her father, who was in jail serving time for violating parole, was not once able to visit his daughter (Thomasma et. al, 1996).
A more recent example of a conjoined twin dilemma is that of Mary and Jodie (false names to protect their identities) born in August, 2000 in England. The twins were joined at the lower abdomen, with Mary relying on Jodie's heart and lungs for her blood supply. Not only did Mary's lifeblood come from her sister, but Mary's face was deformed and she was presumed to be brain damaged. Without lungs of her own she could not even cry. Jodie, on the other hand, was described as being a "bright and alert baby," a very "with it" little girl (Dyer, 2000, p. 529). In contrast to the Lakebergs, the parents, who are devout Roman Catholics from Malta, pleaded that their daughters not be surgically separated. They argued that they could not justify actively killing one of their daughters in order that the other might survive. A statement from the parents reads, "We cannot begin to accept or contemplate that one of our children should die to enable the other one to survive. That is not God's will. Everyone has a right to life, why should we kill one of our daughters to enable the other one to survive?" (Hoge, 2000, p.A5). Doctors at St. Mary's Hospital in Manchester disagreed with the girls' parents, stressing the urgency of separation. They emphasized that not just one, but both twins would die with in three to six months unless they were separated. Plus, if split from her weaker sister Mary, Jody was likely to survive and live a normal life. Seventeen days after their birth, in a landmark decision, High Court Judge, Mr. Justice Johnson, sided with the physicians and ordered that Mary and Jodie be separated (Ramsay, 2000). Although the strong feelings of opposition remained with the parents, they decided not to challenge the court's order.

Moral and Ethical Dilemmas

There is a plethora of complex issues surrounding the lives of conjoined twins. It is often difficult to decide what is best for children who cannot speak for themselves. Considering the rareness of conjoined twins, it makes sense that first-person (singular or plural) accounts of what it is like to lead a life as a conjoined twin are even rarer. When the individuals making choices for young conjoined twins have no idea of what it would be like to experience a life of permanent coupling or permanent separation, decisions become even harder to make. Whose voice should we listen to?
As exemplified by the daily news releases, heated web discussions, and general overall country involvement, the lives of Mary and Jodie stirred up quite a debate in England. The same was true of Amy and Angela in the United States. Brittany and Abby have been photographed, interviewed, and written about in everything from Time, Life, and Dateline NBC. What follows here are a number of questions raised by these recent cases. How do we prioritize the spending and use of medical resources? In the Lakeberg case some argued that the spending of resources on what seemed to be futile care was wrong, especially when so many others are not even able to access basic health care (such as getting vaccines or routine check-ups). Should the parents want everything possible done or accept what God has given them? The other possibility is finding a nice medium between the two extremes as demonstrated by the Hensel twins. They have accepted their born condition but do a noble job of attempting to make the best of the limitations binding them. Are doctors obligated to follow the desires of parents relating to the care of their children when these wishes compel doctors into treatment paths about which they have major reservations? Some advocated that the Lakeberg twins should not be separated because the success of the prospective surgery had a grim outlook. On the other hand, with greater technology and resources physicians are ever more skillful in separating twins. Even though Angela only lived one year, that was the longest a twin had ever survived after such a surgery (Thomasa et. al., 1996). By attempting such procedures, medical and surgical knowledge can be furthered, hopefully extending the lives of the next such twins. Also, who has the final say about the future of a child/ children; the parents, the doctors, or the court? Do doctors have the ethical right not to attempt separation? Persons argue that if someone thinks he or she can save the life of a baby there is no reason it should not be attempted. Is there a moral distinction between what can technically be done and what ought to be done? Although technology is continually improving and growing, sometimes the simplest answers and procedures are the best. Is it better to try to save one life than to passively allow two deaths to occur? This was one of the huge questions enveloping the case of Mary and Jodie. Is it right to sacrifice one life in attempts of saving another? Some people contend that the nonsurviving twin would decide to donate her organs to her sister, could she do so, on the basis that if she did not, both would die.

Conclusion

Reading about the lives of numerous sets of conjoined twins born in the past century or two, and seeing how they have handled their rare birth circumstance, has been very intriguing. The web of moral and ethical issues related to the lives of conjoined twins seems to have developed most heavily in the recent years due to the fact of increased science technology and learning. Even after much thoughtful consideration in relation to the earlier mentioned list of questions, there seems to be almost no concrete answers. The lives of conjoined twins need to be examined on an individual basis. One of the most important points to consider when making a decision about the future of the twin's lives is the magnitude of the quality verses the quantity of life. Although Angela did live one year, life dependent on negative pressure ventilation is not what many would deem to be quality life. In relating to the lives of Mary and Jodie, it is believable that if Mary could talk, she would have wanted to donate her organs to her sister, to improve the quantity (and likely the quality) of Jodie's life.
There are several other factors that can be regarded as essential when making choices concerning conjoined twins. First of all, the family situation needs to be examined. For example, in terms of the Lakeberg twins, there is evidence that had Angela been able to go home, there would not have been sufficient support to raise Angela there on a respirator. Her father had reportedly been involved in a fist-fight at Amy's funeral, stabbed a cousin, and used money designated to support the health care costs of the twins to buy a truck and over $1,300 worth of drugs (Thomasma et. al, 1996).
Secondly, the parents ought to have just as much of a say in the matter as the doctors. Not only did the separation of Mary and Jodie violate their parent's religious convictions, but the parents worry about Jodie's future now that the surgery has recently been completed. They say that their community does not have the facilities to handle Jodie's special needs and they don't want to have to leave her in England, for it would "break their hearts" if they lost the right to have contact with her (Dyer, 2000).
Lastly, society needs to remember that it may not be the end of the world if twins remain conjoined. Abby and Brittany are just one example of the numerous happy and healthy twins who have remained conjoined. Left conjoined, most twins seem able to cope with the unique situations associated with their physical and behavioral similarities. As another recent example, the Gibb twins, joined at the buttocks, remained conjoined until their death at age 54 even though their separation became medically possible (Segal, 1999). It was by their choice that they remained conjoined.
Separation gives conjoined twins a greater chance for a normal life, but no separation accepts the children as they are without risking their lives trying to make them fit our idea of normalcy. Each isolated birth of conjoined twins needs to be examined carefully to determine what is best for the two individuals, whose life depends upon the decision. With the right choice, the flourishing life of conjoined twins is a display of great determination and encouragement.

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