Malformed baby and medical ethics

Parent Cafe
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<p><<there has=“” been=“” at=“” least=“” one=“” case=“” of=“” twins=“” joined=“” the=“” head=“” in=“” which=“” doctors=“” refused=“” to=“” operate=“” because=“” operation=“” would=“” kill=“” twins.=“”>></there></p>

<p>I think they refused to operate b/c of the almost certainty of death of both twins. If one has a chance at life, the decision is usually made to save one. We don’t have all the facts here. It seems likely that having an additional head would cause strain on the intact baby’s organs and the development of her brain. In another similar case, the second head and brain grew faster than those of the intact baby, threatening her life. </p>

<p>In any event, any argument against removal of the additional head defies humanity rather than defines it.</p>

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<p>CtNjPaMom: When you said that, I remembered hearing that the brain uses about 30% of the body’s energy - it has amazing caloric/sugar needs. Is it possible that, while the mother’s body can support two small babies in utero, the cojoined children could not get enough nourishment and nutrients to develop properly?</p>

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<p>Is a brain–with conciousness, self-awareness, and emotions–a human being? Is a brain all that determines life? Is it life without any self-sufficiency? Or, on the flip side, is it life with only a body and no brain? Tough questions; I certainly have no absolute answers.</p>

<p>To expand on this quality of life issue, I am going to assume that the head is concious, and is an individual, therefore worthy of being considered a person. In that case, is the head’s life worth preserving at any cost? Maybe at the cost of their conjoined lives? Place yourself in that little girl’s, or her parent’s, shoes. What decision could you make? </p>

<p>I am not a doctor. But I would imagine that there would be many, many medical complications for both the baby and the head. That girl would never have had anything approaching a normal life. On the other hand, the head would never have any life at all. Again, I think I need to know far more about the medical situation before I can pass any kind of judgement.</p>

<p>Though the word “parasite” is very harsh and inhumane, maybe that was how the girl’s doctors and parents regarded the situation. That head could only live through great sacrifice on the girl’s part. Is that sacrifice something that anyone can ask of a ten-month-old baby? Is it something that can be asked of anyone?</p>

<p>Like others pointed out, we are approaching this from a very American point of view. Any Muslims or middle-easterners able to chip in?</p>

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<p>The term “parasitic twin” appears to be a medical term and not one invented for the news coverage:</p>

<p>*Parasitic twins are rare form of conjoined twins and are consisting of an incomplete twin (parasite) attached to the fully developed body of the co-twin (autosite).<a href=“Source:%20%5Burl%5Dhttp://www.biomedcentral.com/1471-2393/4/13%5B/url%5D”>/i</a></p>

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<p>Para = around, auto = obviously, self (etc). Connotation gone awry.</p>

<p>With mootmom’s article, the limbs seem more like extra fingers or toes - polydactyly, in which we as humans don’t feel terribly bad removing them (obviously, very different origins - one from improperly divided and developed cell, the other from genetic abnormality). However, there is a huge problem when the extra limbs are a conscious head and not a finger.</p>

<p>As a country, we are deeply divided over forcing a woman to continue an unwanted pregnancy; as Jym noted, this is a very similar situation. Second life is entirely dependent upon the first and there are huge bodily integrity and autonomy issues involved. (“Quality of life” just doesn’t seem a strong enough term, because it seems to connote living in the country v. the city, not having a separate being attached to oneself. Tans, no, I don’t think we can ask this of anyone.) Given that, this just doesn’t seem to be a question we can answer - what to do in this situation. </p>

<p>As to what I would do - it would depend on the chance that the girl had on living with and without her Siamese twin, and the chance that medical technology could help them down the line. If doctors thought that, five years from now, they could be safely separated and the non-dominant twin could be kept alive via artificial respiration or the like, it’s something I would consider. However, I always think that there are “quality of life” issues that would strongly discourage me from keeping them attached. Honestly can’t say what I would do in that situation, but I think I would give a differnet answer if I knew two months into pregnancy.</p>

<p>No one wins here. Only can hope that the little girl isn’t told about this - no kid can handle that.</p>

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<p>Did the head eat? I assume not, because not connected to digestive systm? Thus was it technically a parasite? It wouldn’t be hard to know whether or not it was sentient. By 10 months it would be obvious, no?</p>

<p>I have no idea what I would do in those parents situation…</p>

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<p>As a mother of many, I consider what <em>I</em> would do irrelevant in this situation. As medically and ethically complex as this case is, I would stand in full support of the decision of a loving set of parents. NO ONE has the emotional investment in this child/children? that they do. IMHO, they not only have the RIGHT, but they also have the OBLIGATION to consider the quality of life of both the fully formed child and the head. I would shudder at the prospect of ANYONE but the parents (and the medical specialists) weighing in on this decision. Sometimes, in this imperfect world, imperfect things happen which only have imperfect solutions. This is clearly one of those cases. God bless those parents for caring for this special child and for acting, in their belief, in her best interests. </p>

<p>~berurah</p>

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<p>Well said Berurah! I fully agree. Let us thank God, those of us who have not had to make such heart-rending gut-wrenching choices, and pray for the health and well-being of the other twin and the family.</p>

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<p>Berurah, there is a part of me that agrees with what you say. However, unfortunately, just being the parent of a child with problems does not qualify a person to make decisions. I am currently raising 3 kids that we adopted because the parents could not care for these children properly, and my niece and nephew whom I got at much older ages fell in the same situation. When my middle child was being treated at pediatric oncology, a parent withdrew their daughter who had a much better prognosis, on a much lighter protocol than my child, because they could not stand to see her suffer. Different people have different limits on what they can handle </p>

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<p>Jamimom and Berurah, </p>

<p>Excellent posts by both of you. Jamimom, I continue to wonder at how you have continued to be so wonderful to all of your kids. Hugs to both.</p>

<p>I’m not sure that “the State” is better than parents to deal with these things - it is something that I would like to see in the less political arena of medicine. However, even that has its problems: there is an editorial in The Boston Globe today about the practice of doctors forcing women to undergo C-sections or the like as “fetal rights” cases - and judges are handing down the orders. </p>

<p><a href=“http://www.boston.com/news/globe/editorial_opinion/oped/articles/2005/02/20/the_abortion_diversion/[/url]”>http://www.boston.com/news/globe/editorial_opinion/oped/articles/2005/02/20/the_abortion_diversion/&lt;/a&gt;&lt;/p&gt;

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<p><<this child=“” rapidly=“” relapsed=“” and=“” those=“” parents=“” saw=“” what=“” true=“” suffering=“” was,=“” as=“” the=“” died=“” a=“” horrible=“” death=“” learned=“” first=“” hand=“” why=“” oncologist=“” put=“” these=“” kids=“” through=“” chemotherapy=“” despite=“” that=“” it=“” causes.=“”>></this></p>

<p>Your analysis ignores the fact that people are put through the horrors of chemotherapy and radiation and still die horrible deaths, probably worse than if they had not had treatment. I watched my father die like that. </p>

<p><<but it=“” is=“” troubling=“” if=“” the=“” head=“” was=“” decapitated=“” were=“” indeed=“” capable=“” of=“” growing=“” into=“” a=“” thinking,=“” feeling=“” individual=“” because=“” parent,=“” with=“” all=“” limitations=“” being=“” made=“” decision,=“”>></but></p>

<p>I think only very emotionally disturbed parents would choose to leave a second head on a child. And I think that if that was their decision, the state should step in on behalf of the best interest of the child. To me, leaving this second head intact is akin subjecting a terminally ill child to debilitating treatment after treatment when no cure is possible and you are only prolonging his suffering. </p>

<p><<but i=“” do=“” not=“” agree=“” that=“” they=“” can=“” just=“” have=“” the=“” child=“” executed=“” for=“” reason.=“”>></but></p>

<p>You’ve turned this into some sort of hardship issue for the parents. I doubt they acted in their own self interest. I guess your experiences have left you with a very negative view of other parents. I don’t share that view.</p>

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<p>I understand that people are put through the horrors of chemotherapy and other medical tre</p>

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<p>jamimom,</p>

<p>As much as it is possible to tell from selected posts on an internet bulletin board, you appear to me to be one of the most intelligent, kind, loving, gentle people here. That you and I disagree on this issue does not in any way change the respect and admiration I hold for you and all that you have done with your extraordinary family.</p>

<p>When you say this:

,
I think I have qualified my opinion to be based on “the decision of a loving set of parents”. I am not referring to cruel or neglectful parents, but rather those who have demonstrated love and care for their offspring.</p>

<p>Just as the thought of the surgery on those baby girls makes some queasy, I am made queasy by the prospect of anyone BESIDES the parents making the decision for the child. Like it or not, parents can differ greatly in their philosophies regarding what is best for their child. This can be manifested in the context of cancer treatment, treatment (or NO treatment) for a psychological disorder, or in this case, surgery on this baby girl with the parasitic twin. </p>

<p>I consider myself one of the luckiest women on earth. I have carried and given birth to SIX healthy children. To me, it would seem unconscionable for anyone like myself to stand in judgment of this couple who has experienced a nightmare that I will never know.</p>

<p>The only stand that I can live with (my own personal conscience) is to leave this decision in the hands of parents. IMHO, it is really not anyone else’s to make, even if they decide differently than I would (I will go out on a limb here, though, and say that I can imagine myself making the identical decision, should I be in the identical situation). </p>

<p>Please, jami, know that I realize the complex nature of this question and I have the utmost respect for your opinion on this and many other matters.</p>

<p>Fondly, ~berurah</p>

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<p>I have no problem with your view, Berurah. You owe me no apology, nor do you owe anyone an apology for your opinion. It may well be 100% right. And the cafe is a place to bring up these different view points for consideration. What I am saying is that parents are not always the right ones to make life/death decisions, even the most loving ones. There are very loving parents who are just at the end of their personal ropes in a bad situation and the life/death decision should not always be left to them. A child in a situation like that should be removed from the parents’ care. There is no single line to cross in these horrible situations, but a large gray area, and no one is in agreement as to when who should step in because there is no absolutes in this case. I met a family with a severely handicapped child whose care has really wrecked the family because they just cannot do it. They fought a hospital/doctors decision to let the child go at infancy; the child survived, and now they are in a situation that is more than they could handle. Yet their input was their right, their mistake is their right. Should they now be permitted to euthanize (I won’t say execute) this child because now they changed their mind? I don’t think so. This is a very slippery slope that can lead to much discussion, and should lead to much discussion before a decision is made. I am not comfortable with what happened with the baby in this case, but am in no way blaming the parent or pointing fingers to those who made the decision. But I feel there is room for an ethics discussion with all of us free to disagree without getting personal and raising questions on other’s stances. I can tell you that many excellent point have been made in arguments that are in complete disagreement to things that I believe, and I do take those points in full consideration, and have changed my views at times. Most of the time, these things are in such a unclear area that we have to step carefully. </p>

<p>When my father was dying, too slowly and painfully, there were many times that I wished that those “living wills” were present those days. Now they are routine, but, you know what? With insurance the way it works and impatient relatives, I have seen some abuse of those things, and I do question their use. Hospitals are a bit to quick to want those things signed when they are serious considerations, not something that needs to be done now, on the spot, as I have seen some patients urged to complete. We learn from others’ experiences and opinions even as we disagree with them if we keep an open mind. I have no problem with any poster who has a stance on this unfortunate child and the medical ethics involved, but I do have problems with anyone who feels that there are not issues that should be discussed and questions, more in general, not in the specific, for future situations. How strong parental consent and limitations should be considered in the medical treatment of children is a very serious issue. At what success rate should a protocol for a lifethreatening ailment become mandatory for a child? Should the probable condition of the child after treatment be taken into account? Should the parents’ limitations be taken into account? There are parents who say they can’t take the trouble and pain of chemotherapy with a high success rate. There are those who want to go after the 1% chance that involves a lot of pain and suffering. Should the decision of life/death of a child depend on the parents’ willingness to go through the process? These are questions I am bringing on the table. And being loving parents, often does not indicate they will make the right decision. Loving parents can have their limitations and blind spots. </p>

<p>And, yes, I too could see myself making the same decision as these parents here in this particular situation. And I can tell you that H and I wondered too whether just bringing our son home and sparing him the terrible treatment he had to undergo would be the kinder option, particularly since I had spent time helping nurse my father before he died of cancer–I knew too much how that chemo, radiation route could go (that was why I was so late in starting my family). But we felt we had to remove ourselves and feelings from the decision in order to make the right one for our child along with examining these emotions as they do have validity. There were parents who did not do that, and went with their first gut feeling which was to run, shower the child with love and gifts until she died. At what point should the decision go to some sort of arbitration. Now I am sure in this malformed baby case, the decision was not a hasty one as the time span was a long one before the surgery was performed. But the case does bring up some ethical questions. What if the time span were 10 years, and you had a talking, thinking head? Could it then be decapitated? What if that head at 10 months was fully capable of becoming that? All questions for ethics discussion. No personal att</p>

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<p>Jami,</p>

<p>

</p>

<p>I can see what you are saying here, and I understand where you are coming from. There are medical ethicists who are specially trained to study these very issues, but of course, we all have our opinions and our comfort zones in these complex and often no-win situations. </p>

<p>To me, though, there is a distinct difference between debating these things in the abstract and hypothetical and in experiencing them firsthand. I would simply ask, if the parents should not necessarily be the ones to make these decisions, who, REALLY, would be MORE qualified? I will ALWAYS side with the parents’ rights and privileges in these cases, unless it can be clearly shown that they are acting overtly and with malice against the best interests of their own child. Fortunately or unfortunately, two sane, rational, intelligent and caring people CAN totally disagree on how to handle the very same issue. </p>

<p>I will relate a rather interesting conversation that took place between my S and I as he was on the table being prepared for his day surgery on Friday. His birthday is next Saturday, and he will be 18! I said to him, “Do you realize that in one short week, neither your dad nor I will have to sign any of these hospital papers??” He answered, “Well, I would WANT you to sign them anyway. I trust my life much more in your hands than I do in even my own.” Yes, even as an almost adult, he knew that I would ALWAYS act in his best interests and that NO ONE would be more qualified (from an emotional standpoint) to do that, ever. </p>

<p>Nevertheless, you have experienced things that I never have, and I can see where you and I may differ, if for no other reason than our own personal experiential bases.</p>

<p>Respectfully, ~berurah</p>

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<p>I absolutely agree, berurah. No one can stand in judgement of those parents.</p>

<p>To return to NSM’s original question: what makes a person alive? Is it biological functionality or self-sufficiency? Is it conciousness? Is it being able to blink and smile? Is it being able to breathe? Where can we draw the line of human life?</p>

<p>I think the same questions are asked at the other extreme. When, in old age, is it time to end life? Is it when a person’s physical body is dead? Is it when the mind is gone? Is it when an elderly person has reached endless terminal illess? Is euthanasia ever a viable alternative?</p>

<p>I ask because this issue of euthanasia for the elderly seems to be tied into this story. Personally, I do not believe that it is right to keep someone who is not concious, has no prognosis of possible recovery, and who is at the end of their life anyway, alive as a “vegetable.” Nor do I believe it is ethically sound to keep a mentally sane, but dying, person alive against their will. If they are not able to make that decision, then I believe those responsible for their care should be able to, subject to a doctor’s approval. When quality of life is entirely gone, then the option should be available to end that existance.</p>

<p>When my grandmother was terminally ill with diabetes, Altzeimers (sp?), Parkinsons, and suffering from multiple heart attacks and strokes, her children gathered together. They decided to remove her from the hospital and place her under hospice care. Even if they kept her alive, it would be an artificial life, and she would suffer more heart attacks soon anyway. She died a week later, in her own home. She specifically stated that she did not want to live if her life got any worse than what it was before the heart attack. She did not ever want a feeding tube.</p>

<p>I believe my dad made the right decision. He does too - but he still questions. My grandma never regained awareness. Would she have made a different decision for herself? Obviously this is a moral quandary, and there isn’t a right or wrong arbritrary decision. But someone had to make the choice of whether or not to keep my grandmother in the hospital or bring her home. I am just glad that she had people who truly loved her there to choose for her.</p>

<p>Those parents, we can assume, loved their daughter. They made their decision based on that love. They decided that they were not able to preserve that head, concious or not, because doing so would have compromised the functional daughter. </p>

<p>Even if the head was concious, was it truly alive? If so, was that life ethically preservable?</p>

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<p>It seems that the grotesque, almost carnival side-show nature of this particular case removes it in some peoples’ minds from the way “conjoined twins” cases generally seem to be approached.</p>

<p>I have no training in either medicine or ethics, so I bow to those of you who do, but the cases that have drawn public attention in the past seem to focus on the preservation and sustaining of long-term life. In this case, one child appears to be able to sustain life on its own. The other, since there is a head and apparently no complete digestive tract, could not sustain life on its own and I suspect would a) dangerously drain the developmental resources of the other child and b) ultimately not be able to be sustained long-term in the judgement of the medical professionals.</p>

<p>I could be wrong, maybe it could be sustained indefinitely, which is perhaps what the OP is suggesting, in which case this becomes a quality-of-life issue. Does it seem that both of the children in this case are destined for a full life? If not, which of them, if either, does seem so? </p>

<p>More to the point, perhaps, if any of the pro-choice, or even the pro-life, among us, at the “appropriate” time, knew that this was unfolding in our womb, what, quite honestly would the response have been?</p>

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<p>Ironically, I had a rather unusual dream this morning. I dreamt that my dog, who passed away 2 weeks ago and would have been 10 yrs old today, had somehow come back to life, though he was as physically frail as he was before he died. In my dream, we took him back to the vet, to share our surprise at his “return”, but then found ourselves facing the situation that we had been mercifully spared when he died-- At what point would we decide that he no longer had a true quality of life; at what point would it seem more humane to say goodbye and put him to sleep, versus taking him back home again and watch him potentially struggle. In real life, his quality of life was pretty decent until the end, but with each, more frequent visit to the vet, we faced the same question… Mercifully he died at home, in the comfort of his own surroundings, and in his favorite place. I am glad that I awakened before I had to make a decision in my dream, but I have been unsettled by it all day. Then, NSM posted this ethical dilemna on CC. While I certainly do not mean to equate the life of a dog to that of a child, but I can certainly identify with Tanstaafl’s family struggle (as I went through a similar one with my mom a year ago), and I do believe, in some respects, that veterinary medicine is way ahead of human medicine, in it’s sensitivity to minimizimg suffering. </p>

<p>I sympathize with jamimom’s terrible ordeal, and while I have been faced with medical crises/hospitalizations/surgeries with each of my kids, I am fortunate that I was not faced with the decision that the parents of the twin faced. I doubt in this case, with all the media attention that it received and the impact of the final decision, that it was made lightly, and seriously doubt that it was made without a medical ethics oversight committee, regardless of in what country it took place. I know there are some “bad” parents out there. However, I think there is an equal chance that these parents made their surgical decision for the right reasons, in the best interest of the surviving twin, as for the wrong, potentially selfish reasons. In this case, I see no reason to assume the latter.</p>

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<p>Jym, though the years were indeed terrible, our son is alive and healthy today. But I can tell you that there were disagreement between H and me on various aspects of treatments. And I saw terrible disagreements betwen parents of many children when situations got rough. A lot of divorces when a child is seriously ill. And who should cast the deciding vote when the parents are split? It is a myth that families grow stronger with these crises. There are those that do, but more times than not, a lot of serious dysfunctions occur and many families do not stay together. </p>

<p>I am currently nursing two old dogs, long past their expected lifetimes. They are fine until a crisis hits, and I have to make a decision each time on how aggresively to treat them. The one dog had a bone cancer at age 13-he is a rottweiler/bull mastiff mix, and the stats said that the chemo would give him very little additional time as these bigger dogs do not live long. He will be 17 this June. The hound is diabetic and we are now having eating issues with her and I am force feeding her twice a day, traumatic for the dog and for anyone witnessing this, especially me. But for23 hours a day she is as fine as could be, blind, deaf, but roaming the house, stretching out in place in the sun, doing her business outside when I let her out, eager for her walk. Just won’t eat which she has to because of the insulin she needs. How long to do this? The crises are coming closer together at this point </p>

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<p>Seems as if Jamimom (correct me if I am wrong) is saying that some parents make the decison based on the question, “What is right for these children? What is best for them?” Other parents - less caring, more selfish - make the decision based on “What is easiest for me? What decision makes my life better?” The first group, IMO, can reach almost any conclusion and I would probably support it and call it “right” - it being a reasoned decision made by people who love the kids and who act in their best interests. The second group is a different story… in a much lesser form, you can see those types of parents in the stories the kids on these boards have - of parents who refuse to pay for college, who refuse to fill out the fin. aid forms, who try to control their kids too much… and, given what a mess they can make out of a normal situation, I see Jamimom’s reluctance to have them making such huge decisions for their kids. </p>

<p>Such a bad situation though - there is no good decision for those parents to have made…</p>