The Ethics of
Conjoined Twin
Separation
by
Suzanne Landis
Biology Senior Seminar
Dr. Trent Smith
November 12, 2001
Suzanne Landis
Bio Sr. Sem. Thesis
Ethics paper
Conjoined twins are a rare phenomenon. In the even that a set should appear where one twin is dependant upon the other, I believe that they should be separated, at minimum, to save the life of one. At the same time, I believe that every set of conjoined twins is its own special case. In this study, I will present the background information on conjoined twinning, give a few case studies, and give the pros and cons of conjoined twin separation. I will end with my own views on the subject.
How do these mutations arise? A.A. Zimmerman hypothesizes that, “[Conjoined twins arise from] an error in blastogenesis due to incomplete fission of a single zygote, resulting in the development of two centers of axial growth instead of one” (Juretschke, 9). Within the first two weeks of embryo development, there is an error in the embryonic development of the blastocyst, composed of about 100 cells. The single, fertilized egg fails to separate properly, as it would to form identical twins (a fertilized egg divides completely during the initial stages of cell differentiation). This failure of division results in two identical, same sex twins, conjoined in some manner. No one is clear on why the cell fails to divide completely.
Statistically, the chances of failed egg division resulting in conjoined twins is about one in 250,000, as compared to the one in 200 chance of giving birth to identical twins. Of those conjoined, 40-60% are stillborn, and 35% of those twins that survive birth die within the first 24 hours. Of those one in 250,000 births, there is a 5-25% chance of existing in the world for more than a day. Interestingly, about 70% of those who beat the odds were female, and there have been about 600 documented cases of conjoined twins that lived full lives together (www.twinstuff.com). Of those new cases in which there was an attempted separation, only about 5% leave the hospital (Wirt, 525).
It also has been discovered that the rate of occurrence is much lower
in Anglo-Saxons than in other ethnic groups (Juretschke, 9).
There
are a number of possible types of these births. These include thoracopagus, the most common, affecting 35% of all
conjoined twin births, where the chest wall is shared, and often the heart. Pygopagus is another type, occurring in 19%
of all cases, where the twins are joined at the buttocks. Two significantly less occurring patterns
are ischiopagus, 6%, connected at the tailbone, and craniopagus, 2%, with a
fused skull. Some other commonly
occuring types include cephalopagus, with the upper torso and back of the
cranium fused, and dicephalus, having two heads and necks connected to one
body. Cephalopagus and craniopagus
twins are rarely operated on, because the brain is such a delicate organ on
which to operate, especially when shared brain tissue is involved. Other types include parapagus, a lateral
fusion of the lower half of the body, and omphalopagus, joined frontally at the
midsection. Finally there is parasitic twinning, where one twin is dependant
upon the other for life, and often one is misformed, lacking organs or fully
formed parts (www.twinstuff.com).
In the case of parasitic twinning, there are also specific kinds. These range from globular malformed tissue to branching heads or other extremities. But what happens when you have an almost complete “appendage”? In many cases where organs are shared, namely the heart, an organ, or multiple organs, often fail because the system is not meant to support two bodies. The chance of heart failure in a case where one heart is share is from 50-75% (Norwitz 2).
So with these chances of survival and mechanics in mind, is it ethical to separate conjoined twins, knowing that one twin is supporting the life of the other, knowing that one twin will die if the pair is separated? And when that decision is being made, who makes the final decision? Should it be the parents? The courts?
In the case of Mary and Jodie, this pair of conjoined twins born on the island of Gaza was brought to the UK for medical attention. The parents were devout Roman Catholics and strongly opposed the possibility of killing one twin intentionally. For this reason, they refused to consider separation of their twins. The case ended when the House of Lords ruled that if the parents did not allow the separation to take place, they would be charged with manslaughter (Harris, 1). The following diagram is a representation of the connection between the twins. It depicts the importance of the fact that Jodie’s heart pumps both her own and Mary’s blood, as well as the point that Jodie’s lungs provide the breath for both of the twins.
(http://www.johnnypops.demon.co.uk/poetry/articles/jodieandmary/maryscouldhavelived.htm)
The diagram also shows the physiological impossibility of the twins surviving. Mary and Jodie are fused at the base of the spine, and would certainly die if not separated. But is it right to take the life of one to save another?
The parents of these twins, as well as others, had a number of reasons to battle the court decision to separate the twins. The real issue with the parents was that they were singling out one twin to die. They wanted to wait for God’s will to take effect. “We cannot begin to contemplate that one of our children should die to enable the other one to survive. That is not God’s will.” (Hoge, 2). Their interpretation was that God had provided, and they would not to interfere by choosing which one would live and which one would die.
There are also the arguments against the operation such as how do you determine which one will die? Why did Mary not get the chance to have organs donated to her? (http://www.johnnypops.demon.co.uk/poetry/articles/jodieandmary/maryscouldhavelived.htm). After separation, what are the chances of survival? And what will life be like for the surviving twin? What will the cost be? (Thomasma, 7).
The responses to these questions were that in this case the, weaker twin was chosen for sacrifice because she could not possibly support herself independently. But each case is it’s own. Mary had an underdeveloped brain and was lacking in the ability to pump her own blood or breathe her own air (Siegel-Itzkovich, 1). The chances of survival of the operation are quoted by Wirt to be appoximately 5% (525). And her expected life after the operation had a positive outlook, with the potential for childbearing and a normal life expectancy (Siegel-Itzkovich, 1). Other cases are not so lucky.
The parents looked to God for direction, as well as did a supportive Roman Catholic church. But what is the will of God? Were the twins meant to live as they were borne, or was present day medicine, which God has allowed us to discover, to be used to save at least one life? Why would a court system choose to take a life? There must be some reason for the law to overthrow the voice of the parents as well as the church.
The most forward reason was the possibility to save a life by using the technology that God has provided us with. We have a moral obligation to at least try to preserve life when we have the opportunity. At the same time, you must somehow justify the killing of another human being, no matter how you look at it. One theory is to consider the weaker twin to be only body parts, which are inconvenient to the stronger twin. The weaker twin is therefore synonymous with an appendage and therefore morally, it is acceptable to remove this “growth”. The weaker twin can also be considered a parasite, simply feeding off of the stronger twin. This situation will certainly result in death, as in the case of Mary and Jodie. In their case death would most likely have been caused by congenital heart failure.
But there are also four more involved reasons to support the separation of twins when it is known that one will serve as the sacrificial lamb. The first is the value of the life of the two individuals being separated. What will their disabilities be? Will they need to be in a bed or on a respirator for the rest of their lives. Often physical disabilities arise from conjoined twin separation and the survivor(s) may not be fully formed. One social activist writes...
“The twins had an equal right to life under the law and the Human Rights Act. 'Mary' did not go on the transplant list because doctors decided her life was worthless. They did not try everything to save 'Mary's' life because she was disabled an this is wrong. Quality or length of life is unpredictable and not about impairment. Neither of the babies were dying when they separated them (they kept the twins joined to gain strength for the operation.) There was no reason why the operation should had gone ahead on November 3rd, other than the LAW permitted this to be done.”
(http://www.johnnypops.demon.co.uk/poetry/articles/jodieandmary/maryscouldhavelived.htm)
Then there is the proposition of the “Double Effect”. The idea is that, “if two or more effects of an action are foreseen, one being good and the others evil, if one intends only the good, then the action is permitted” (Thomasma 9). In effect, the rights cancel out the wrongs. Thomasma gives the example of giving morphine to nullify the pain of certain patients with terminal illnesses.
Next is the thought that one twin acts as a donor of body parts for the life of the other. “Carol T.”, on the Guardian Unlimited chat room suggests that, “...Only if Mary chose to sacrifice her life is it a loving thing [to separate them]. Mary made no such choice...[the sacrificial decision was made for her].” In response “Jenny28” states, “... If you were a doctor and had two patients who were dying, and you knew that you had enough medicine for one but not for both, your decision to give to one but not the other would effectively be the death of the one whoe did not have it – so would you withold it from both? ... [In the case of the twins] I hope I would love the one child enough to let her go and the other enough to try and rescue her.” At the same time, we must realize that Mary could not survive alone, and for this reason she was chosen as the sacrificial lamb (Hollinger 2).
Finally, there is the theory of the “Unjust Aggressor”.
“If a bus were stopped by terrorists, and they demanded the release of one person whom they would kill as a hostage so the rest might live, it would be immoral for the people on the bus to choose someone to be the victim. They would all have to die rather than single out one person on the bus themselves, thus leaving the occupants free of that horrible choice, they would be justified in handing over that individual so that all the others might live. Nature itself does by reason of the insurmountable defects present, just as the bus occupants do not decide who will die, but permit that death by turning over a designated person so that all might live” (Thomasma 8).
In this case, the parasitic twin is considered to be the unjust aggressor, asking life from the stronger twin without mercy.
In my opinion it is disturbing that some persons say that life is not worthwhile if you are a disabled person. It is a rude statement to anyone who has a disability to say this - polio victims, handicapped persons, or any other person inhibited from living life to the standard of the “norm”. Who is to say conjoined twins can’t have an incredible life together, or separate. Cheng and Eng Bunker, the originators of the term “Siamese twins” lived together had families with two sisters, fathered 22 children together, and then it was proposed after their death that a simple operation could have separated them (twinstuff.com). As a person who has been sincerely affected by my relationships with certain disabled individuals, I don’t understand how anyone could consider the lives of disabled persons to be worthless and easily discarded.
In response to the idea of “Double Effect,” a criticism has been made. Thomasma states that, “the double effect doctrine includes a strong proviso that the “evil” effect cannot be the means of achieving the good one, since we cannot condone an evil means to accomplish a good end (the end does not justify the means)” (9). Reverand Cormac Murphy-O’Connor’s response sympathized with the response of the parents of Jodie and Mary,
“There is a fundamental moral principle at stake – no one may commit a wrong action so that good may come of it. The parents in this case have made it clear that they love both their children equally and cannot consent to one of them being killed to help the other” (Siegel-Itzkovich 3).
Even the coroner gave an interesting report, “Mary died following surgery separating her from her conjoined twin, which surgery was permitted by an order of the High Court, confirmed by the Court of Appeal.". This verdict was interesting in comparison with other courts in that other courts had suggested that the death was accidental, but rather presented it as a side effect of the separation. (http://www.johnnypops.demon.co.uk/poetry/articles/jodieandmary/maryscouldhavelived.htm).
And finally, what about the “Unjust Aggressor”? I agree with this theory. Thomasma gave another example besides that of the bus terrorists, dealing with rock climbing,
“Someone slips and falls [while rock climbing] and is now hanging over the precipice. He is tethered to another climber higher up, who will herself fall and die if she does not cut the rope. Is she justified in doing so? The common answer is that she is, as it is better to save one life than have both senselessly die. This fits with our instincts that accidents happen and we ought to be able morally to cut our losses and run. In this instance, the fellow climber instantly became an unjust aggressor on the life of the secured climber” (9).
If both will certainly die, then why not at least try to save one? This reason is the backing for my belief in conjoined twin separation.
I do, however, find it interesting how some try to defend their case. From one person's paper on the separation of Mary and Jodie came the following comment, “In the Appeal Courts the surgeon's said (translation of medical blah): 'Organs are hard to get. Mary is so sub normal it's not worth trying'. Not even 'Mary's' own solicitor challenged this” (http://www.johnnypops.demon.co.uk/poetry/articles/jodieandmary/maryscouldhavelived.htm). For a woman against this position, Gosia Brykczynska implies that the parents of Mary and Jodie were mentally uncapable of deciding what the medical treatment for their children should be (6). From all other sources the parents seem competent, and care dearly for their children. But while they want to save their children, their lives are more devoted to God. In this case I feel that the British Court System was faulty in taking over the decision of the parents. While overstepping the boundary of decision-making impinges on the right of a parent to decide what is best for their children, sometimes others are more knowledgeable about what the possibilities are.
From my research, I have decided that I agree with conjoined twin separation if the lives of both individuals are at risk. I feel that God's will is that we should use the resources given us and that it is a moral obligation to save a life when we have the chance. If the lives of both children are at stake, then it is better to at least save the life of one. Also, there is the possibility of organ transplants, with chances of survival of the operation improving every day. The Mathibela Twins are a prime example of the possibility for success. In South Africa the Craniopagus twins were successfully separated in May of 1988. Events such as these give me hope for the future.
References
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updated: ??
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