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Thread: Conjoined twin separation vs. SCI treatments

  1. #31
    cjo, I completely understand where you're coming from concerning this thread / perspective.

    Without going into a long post reviewing what's been said let me just respond to your last post concerning "50% mortality rate".

    I agree with your risk/reward ratio and assessment. However, if one of us underwent such a procedure (sci experimental) and we did die the research would be knocked back even further timeline wise.

    Can we afford that risk? Can we afford not to take that risk?

    ...at what price - progress?

  2. #32
    Senior Member DA's Avatar
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    I agree with your risk/reward ratio and assessment. However, if one of us underwent such a procedure (sci experimental) and we did die the research would be knocked back even further timeline wise.

    Can we afford that risk? Can we afford not to take that risk?

    so far no ones has died, but we are still using the same timeline as if someone has died so we wont be losing anything.

  3. #33
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    Originally posted by ChrisD:

    However, if one of us underwent such a procedure (sci experimental) and we did die the research would be knocked back even further timeline wise.

    Can we afford that risk? Can we afford not to take that risk?

    ...at what price - progress?
    Thought provoking...

    I doubt such a surgery will ever be attempted again on conjoined twins of that age(because of the failure and because they now separate twins as infants).

    BUT, when the media grabbed a hold of this story the twins were commended for their bravery and the team of doctors attempting this were not criticized for doing so. Nobody seemed to point out that their condition was livable and non-life threatening. I haven't heard anybody say they were foolish for trying.

    In my case, I'm keeping my plans relatively secret(besides this forum). To me, the potential benefit far outweighs the risk - a risk that I feel needs to be taken. If somebody did die, I could only hope that the statistics on SCI deaths due to pneumonia, renal failure, and other complications were pointed out to society. The potential savings to taxpayers and the shortened lifespan of SCI victims could also serve as justification.

    I believe the current cell transplants being done overseas are going a long way to prove that cells can be implanted into the spinal cord with little or no risk. Aren't Phase 1 trials for safety and feasibility?

    To directly answer your question - I feel that we can't afford not to take that risk(we have to try).

  4. #34
    ChrisD, one of the criticisms that might be applied to the separation of the Laleh and Laleh is that the 50/50 chances that are widely cited has no basis in empirical evidence. Because separation of adult craniopagus had not been tried before, the statement that there is a 50% chance of mortality is inappropriate. Such predictions are misleading. Nobody knew what the chances were. In fact, one might conclude from the single case that the mortality rate is 100%. Wise.

  5. #35
    Now, opinion is divided as to whether doctors should have even tried to operate, and whether a patient's wishes, however desperate, are enough to justify a risky and experimental procedure.

    Supporters of the surgery say the sisters, intelligent and well-educated law school graduates, understood the risks and had every right to take them. Critics argue that the risks were too high and that doctors had an ethical obligation to say no, especially since the sisters were physically healthy and the operation not medically necessary.
    2 Women, 2 Deaths and an Ethical Quandry

  6. #36
    Senior Member mk99's Avatar
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    "... Critics argue that the risks were too high and that doctors had an ethical obligation to say no, especially since the sisters were physically healthy and the operation not medically necessary."

    These patronizing cowards should not be in medicine as they clearly lack basic human empathy for pain, suffering & misery. They also do not seem to comprehend a human being's fundamental right to self determination.

    And they really piss me off too.

    You ever notice that the majority of people contemplating the deep "ethical arguments" over things like ESC have no direct connection to the potential benefits? It's easy to argue against the "morality" of something when it's nothing but a conversation piece for you.

  7. #37
    Two cliches come to mind:
    Walk a mile in my shoes..And hind-sight is
    twenty-twenty.

  8. #38
    Super Moderator Sue Pendleton's Avatar
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    "And he said members of the surgical team that operated on the women made "a great deal of effort" to try to talk them out of it beforehand."

    In the twins place it would have taken me watching most of this team living with their heads wrapped tightly to a brother or sister for a "normal" week in the doctors' lives to be dissuaded. How many married doctors on the team would have managed their normal routines in such a condition? How many spouses would have sex with their spouse/ team doctor while that doc was tied tightly to their sibling? How about managing toileting? Work schedules? Social lives and seperate interests? Without these things life, is at best, at the survival level not the mentally healthy lives stages of "healthy" 29 year old women.

    Do they teach Maslows Hierarchy in medical school? How about looking at the entirity of a person's life and not just their blood pressure, tempurature and weight.

    IMHO those doctors that tried to talk the twins out of seperating had a lot of balls just treating them since their knowledge of what constitutes human health is severly lacking.

    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

  9. #39
    Senior Member Max's Avatar
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    Iranian twins' surgeon ponders what went wrong

    Iranian twins' surgeon ponders what went wrong
    Hera Diani, The Jakarta Post, Jakarta

    http://www.thejakartapost.com/detail...824.C01&irec=1

    The world's attention turned to Singapore last month, hoping that the wish of Iranian conjoined twins Ladan and Laleh Bijani to be separated would come true.

    The historic attempt to separate the 29-year-old sisters who were joined at the head ended tragically when they died within 90 minutes of each other.

    The statement from private Raffles Hospital said that the twins had lost a lot of blood as the neurosurgical stage of the 52-hour operation, in which their tightly enmeshed brains were separated, was coming to an end.

    Many questioned the ethical appropriateness of the operation, noting that German doctors had refused to operate on the Bijani sisters in 1996 because the operation would most likely kill one of both of the twins, or leave them in a vegetative state.

    Since similar operations -- always performed on infants or young children -- began 50 years ago, four of five attempts at separation have resulted in severe complications for one or both of the twins.

    In a recent interview with Kompas daily, top local neurologist Prof. Dr. Padmosantjojo blasted the Singaporean surgeons for undertaking the operation and accused them of ignoring the principle of honesty in helping patients.

    Singaporean neurosurgeon Keith Goh has had to take a lot of the flak; he led the team of 24 doctors and about 100 medical staff for the Bijani sisters' surgery.

    Goh, 42, also led a team in 2001 that successfully separated Nepalese babies in a 97-hour operation, which had prompted Ladan and Laleh to contact him.

    I had met Goh earlier this year at a dinner arranged by Raffles Hospital and Singapore Tourism Board. He was a nice person to talk to, soft spoken and very well-mannered.

    I contacted him again through e-mail following the death of the twins, and below is an excerpt of the interview.

    Question: After the twins' surgery, did you go straight back to work?

    Goh: After the surgery was completed on Tuesday, 8 July, I went back to work the next day because there were many things to organize and sort out, such as the memorial service, the medical Debrief Meeting and seeing many of the twins' relatives and friends.

    However, I took a short break that weekend and spent some quiet time, resting in Bintan.

    Could you describe the situation before, during and after the surgery?

    Before the surgery, we were very busy, making arrangements for the big operation. I felt excited and happy that there were so many experts coming together in Singapore to help the twins. We had two days of intense discussions and very detailed preparations before we started surgery, and the general mood was positive and upbeat.

    Once we began the surgery, there was much stress and tension, especially because of the many difficulties which we experienced. However, as we overcame these problems and the separation went on, it seemed that we were going to be successful.

    Unfortunately, severe bleeding occurred during the last stage of the disconnection because of unforeseen blood flow changes. At that point, we were struggling to stop the bleeding and it was very tense in the operating theater.

    When it became clear that we were not going to succeed, the room became very quiet and all of us felt very sad. Several nurses were crying, and most of the doctors were very quiet.

    After that, I felt numb, in shock. I had no feeling at that time, and even at home later, I could not sleep.

    Early the next morning, I started crying. So did my wife, because we had come to love the twins, like our own sisters. This grieving process went on for two-three days, and we needed the time away in Bintan to recover.

    You said that you have learned many things from the surgery which will benefit future patients. What did you learn?

    We learned that there are physiological changes in blood flow patterns in the brain which cannot be predicted with our present radiologic tests. More research must be done in these areas, which will benefit patients who suffer from blood vessel malformations in the brain, and those who have craniofacial malformations.

    What is the most important lesson that you learned from this tragedy?

    The most important lesson was how to work together as a team. Although there were so many experts from various parts of the world, they were able to put aside all their differences and to work well with the local doctors for the good of the twins. That was wonderful to see and experience.

    Many people question the ethics of the surgery, saying that the doctors knew the chances of success of the surgery were slim but decided to go on with it anyway. What is your comment?

    I think that it is easy to criticize the decision for surgery, but there were strong medical and psychological reasons to proceed with the operation.

    First, the twins had a congenital malformation which was causing them physical discomfort and pain. Second, we found out that their brain pressure was twice that of a normal person. If this was left untreated, they were at risk of getting a stroke.

    Third, the psychological problems of being so deformed, resulted in severe depression which required high doses of antidepressant medication. I believe that we made the right decision to try to help these girls. Although the risks were high, we explained this very clearly to them and they accepted this.

    What is exactly the cause of conjoined twins? Is it genetic?

    Conjoined twins are not genetic; there is a failure of normal division of the fertilized egg and something affects this process so that the two cells remain joined. Why did you choose neurology?

    I decided to study medicine because I wanted to help people. It is difficult in life to find a profession where the primary purpose is to heal and relieve suffering, and therefore to make life in this world better for everyone. Medicine fulfills this need in me.

    Neurology and neurosurgery are challenging areas of medicine, in which knowledge is growing rapidly. I am interested in how the brain functions, and I consider it as the most important organ in the body because it defines what kind of people we are.

    How is progress in the world right now?

    The 1990s were the decade of the brain; much progress has been made in the study and understanding of how the brain works and how to treat brain disorders. In this new millennium, we hope to find cures for brain tumors, spinal cord injury and stroke. I am very hopeful.


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