Di at Doctor and Covenants pointed me to this story, where a brain surgeon was operating to remove a mass from a patient and and ended up finding a foot.  The story states that this is either a rare type of tumor called a teratoma or is it a rare case of a twin that remained attached to the patients and was totally enveloped into the skull, a condition called fetus in fetu.

         The image is striking, and gives a certain visceral reaction, which is largely why pictures like this make their rounds on the internet. 

I do think teratomas are fascinating.  Others medstudents or physicians, or people for that matter,  might use the word repulsive, or gross.  It is disturbing to see disorganized recognizable body parts.   At the same time, trying to understand what it is that allows these cells to develop, and what it is they lack is an intriguing scientific mystery. 

    They represent a group of cells trying to develop properly into a human being, but lacking the central, basic organization to do so.   They are a prime example of pluripotent cells, able to become any cell or organ in the body as opposed to totipotent, able to become a complete human being.  I blogged about them some time ago in trying to explain the completely plausible middle ground in the stem cell wars.

   The fetus in fetu effect is likewise a fascinating subject.  Twins are an interesting theological challenge.  They are a study in how we as individuals are in fact, more than our own body, our own DNA, as Yoda would say,”more than this crude matter.”   We are also shaped and molded into something new by our experiences. 

      Sometime ago, Radiolab did a fascinating episode describing a woman who actually was composed of the DNA of two different individuals depending on which part of her you got the cells from.  She was literally fraternal twins fused, a chimera.  These kinds of stories can challenge our most basic assumptions about identity, but in the end tell me we are more that just our DNA. 

   In life, the program for biological development works miraculously well, but will on very rare occasions dysfunction.  Sometimes early disasters are repaired or lead to odd side effects like the picture above.   I wonder about the kind of guilt that being a surviving twin might leave someone with.  How would it feel? 

     More than anything I wonder about our innate fascination and revulsion with those who are not whole.  What is it about John Merrick, the Elephant Man, for example, that caused him to have to endure the challenges he did.  What is it that has him living in our cultural memory to this day.  There is a disturbing human attraction to the “freak show.”  Just as there is the constant slowing of traffic at the gruesome seen of an accident, people want to turn away, but can’t.

      Years ago, my wife and I were travelling through the plains on the very long drive from medical school to my Rocky Mountain home.  We past miles and miles of signs advertising an exhibit of deformed farm and domestic animals.  There was the two headed snake, the 5 legged calf, etc. 

     The site was also an officially designated tourist stop for the state, and we needed a map, so we stopped.  I am afraid I severely offended the attendant when all I wanted was a map and I expressed no desire to see the show.  Here defensiveness was revealing. 

     We all feel there is something wrong with the freak show, but that doesn’t stop the attraction.   We know gawking diminishes the dignity of these people or these creatures somehow, but reflexively we are still drawn to it.  As a defense, I believe these feelings of guilt and disgust are projected, so that the presence of disease itself provokes our disgust with the “freak”, rather than with ourselves. 

     Becoming a doctor involves initiation into a science built upon breaking one of the most universal taboos in existence, human dissection.  each of us it taught human anatomy up close and personal by dissection of cadavers. 

      Throughout the process, the dignity of those who donated this body so you could gain access to a very privileged knowledge is emphasized.    With varying degrees of success, becoming a physician means retaining the fascination with the human body, and with disease, without losing this respect for human dignity.

   We are not immune from the reflexive feelings of revulsion at seeing a body broken and deformed by disease.  I have witnessed on more than one occasion, colleagues who malign parents with children with severe cerebral palsy, for their insistence on prolonging their life.

  I think these same feelings of revulsion are no small part of these reactions.  This is why I fear the society’s creeping embrace of euthenasia.  There is a strong emotional pull in the wrong direction, which is only multiplied by financial concerns.

    My own field is often maligned by other pediatricians.  For them, it is just “too sad.”  While they would be surprised to learn these patients are not the bulk of what I do,  child neurology does require on occasion ,by its nature, making peace with some horrific tragedy.  It requires dealing with this initial revulsion in a positive way, to where you can see the human being, the child of God beneath the tragedy and disability.  It means looking beyond the brokenness to find beauty.

     At least, this is what I tell myself my to convince myself my own fascination with disease is not a bad thing.   It maintains my admiration for those parents who deal with these issues daily.  It steels my resolve to be there as a resource for them.  It has enabled me to experience the simple and profound joys that many of these patients have in simply speaking a word for the first time, or moving a limb purposefully.  

   My wish is that we could all take the fascination with the so-called “freaks,” the tragic, the violent, or the bizarre and unusual, and use them as an opportunity to learn more about the wonders and meaning of life as well.  Perhaps then we can all walk a little taller, with both their and our human dignity intact.

   Tagged: abnormality, biology, child neurology, chimeras, cloning, development, dignity, disfigurement, euthenasia, growth, guilt, identity, imperfection, life, malformation, medical ethics, stem cells, suffering, teratoma, tragedy, twins   

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