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The Longest Now


Musings on a siamese tragedy
Saturday July 12th 2003, 2:48 am
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I almost cried when I read the paper on Wed, and saw that the Iranian siamese twins had died in surgery — the first time I had suddenly choked up since I read the [now known to be blatantly misleading] articles on the looting of the Baghdad museum.


Their parents in Iran claimed that they weren’t allowed to see their daughters after the doctors who agreed to operate on them had convinced the girls to have the operation… the girls were convinced there was ‘at least a 50% chance’ the operation wouldn’t work properly.  I thought this meant that, as with recent infant/toddler separations that worked imperfectly, there might well be some brain damage or other slow-healing trouble after the operation was completed.  But now it seems there was at least a 50% chance of mortality, along with vastly increased morbidity due to their growing up together (and a significant shared blood vessel).  So who told them what, and to what ends?  where did the money for this massive 100-doctor operation come from?  what kind of preparations and trial runs did the operating team do before undergoing this 50+-hour operation? 


Some older history of such twins [emphasis added]:



In recent years, no set of conjoined twins has captured our attention quite like Angela and Amy Lakeberg. Born in Indiana on June 29, 1993, the babies were joined at the chest and shared a heart and liver. They could not survive together so it was decided to separate them, ultimately sacrificing one for the other. The surgery took place at Children’s Hospital In Philadelphia when the girls were seven weeks old. Angela, the stronger of the two, was chosen to be the survivor. Angela never went home. After ten months in the hospital, she died of pneumonia. Her death raised powerful questions about the ethical and economic costs of separation. For some the financial expense was too much (well over a million dollars). For others, it was worth the pain and suffering. The medical community believes that the skills and knowledge acquired from surgeries like the one that separated Angela and Amy would aid in future attempts. The challenge for many observers lies in the conflict between the desire to help medically fragile conjoined twins like Angela and Amy, and the need to justify the emotional and economic costs of their care.  [from zygote.swarthmore.edu]


(It is clearly fated for me to be reading about this — the above passage comes from an online article on siamese twins which quotes extensively from Alison Pingree, my freshman Expos teacher!)


And, from the Globe, here’s a bizarrely inappropriate quote from the author of Chang and Eng, a recent novel about the original Siamese Twins:



“After a life deprived of everything from romantic love to the choice of when to wake up in the morning [the] Bijani sisters [were] women who had to live a shared life of constant, quotidian sacrifice.”  — Darin Strauss, Boston Globe (via rferl.org)


(Inappropriate because anyone who looked into the lives of Chang and Eng, who ended up marrying two American sisters and fathering over 20 kids, would know that they were not deprived of romantic love…)

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