Cursed

One thing you come across regardless of the area of medicine that you are in is the "chronic" family.  While we all have our diseases that run in the family or problems that occur infrequently (sometimes tragically), for these rare few tragedy, pain, and suffering is the norm.  If you saw them walking down the street a dark cloud might be following in their wake.  I'm almost apprehensive in writing about this because I feel I may jinx my own family as God has blessed us with relatively good health.  Today I came across one such family and having a little extra time than I'm usually accustomed, I spent some of it getting to know them after I checked on how their son was doing.  This is a family with a genetic disease.  The father carries the gene, which although not tested, is probably the most severe form of the disorder.  They, throughout their life, develop tumors all over their body, these tumors develop as early as 18 years of age and effect everyone who inherits the gene.  The tumors themselves are usually not malignant (the kind that spreads all over the body), but the size and frequency of these masses are problem enough as they develop behind eyes, block arteries, and even compress brain tissue...basically they spend more time in and recovering from surgery than you or I could imagine in the darkest corners of hell...and yet the most amazing part of it (for me) is that they somehow manage it and find a way to move on.  I suppose I could find inspiration in a group of people like this and to some extent I do - I am amazed at what the human body and spirit can endure, but from a scientific point of view I find myself slightly angered by their choices. 

While the field of genetics has only really blossomed recently, the idea of inheritable diseases has been around for a very long time.  Why did these people keep reproducing?!?!?  It seems selfish to me to knowingly put a child through this type of medical horror day in and day out...really for any argument I can come up with to justify it...it still seems ridiculously selfish.

I can see the argument for wanting your "own" child.  I realize there is an argument for the family that is so used to it, having tumors pop up all over your body isn't abnormal to them.  I know that some will argue for God's will. I spoke with this family for a good little while, but I never got up the guts or got comfortable enough with them to find out what their argument or reasoning was for bringing children into a world to be tortured. 

The patient I am seeing, is here for a stomach flu (gastroenteritis), something totally unrelated...to be totally understated...he is just REALLY unlucky.  As of right now he is completely healthy and hasn't shown any signs of the tumor growth, but, as he has been tested, he very likely will start developing them sometime in high school.  Looking at the father,  who is in his late 30's, I can see how difficult this life will be for the child.  The father is missing an eye, walks with a limp, and (as I found out from speaking with them) has had most of his bowel removed.  His face is scarred and areas of it are hollowed out from various tumors that have been removed....although chronologically this man is only a decade older than I, the life he has lived has advanced his age far beyond his years. 

I see the father and the older sister who is similarly effected and I wonder why you would do this to someone you love? why you would put them through this, bring them into this world?  I don't have an answer or a clever thought to end my post, I don't know why and I know it's beyond me to judge them...but I can't help but do it a little anyway...I think I'm judgemental because I don't understand them and maybe the closed-off, relatively "good" reality I live in doesn't want to understand them...I think deep down it's really that this cowardly doctor hopes and prays he never can relate to or understand such a horrible thing.

Newbie Doc