Although I've faced the dark, scary horrors that this condition can bring to life; I have chosen to keep things realistic with a heavily positive edge.
Perhaps this article from Life News features a different diagnosis, Trisomy 18, but the prognosis and the story are entirely the same. You can read the whole story HERE, but I've quoted some important points:
A piece of the Hippocratic Oath, the oath historically taken by physicians who swear to practice medicine honestly and comes to mind so often when reading cases such as this: "I will prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone." "In every house where I come I will enter only for the good of my patients, keeping myself far from all intentional ill-doing..." and most importantly when I cannot see how else to view these cases other than as a violation of this oath, "If I keep this oath faithfully, may I enjoy my life and practice my art, respected by all humanity and in all times; but if I swerve from it or violate it, may the reverse be my life."
And back to the gory topic of this particular article:
I first read this article the day it was posted, just over a week ago on June 16, 2014. It's not an outdated medical practice, one that died with institutionalizing children with special needs (a practice that has, unfortunately NOT died entirely!), this is true-life and considered common practice today...
Unfortunately, aside from a blip in an online dictionary and a brief mention of the discussion on NPR back in 1998, I have been unable to sit and dig through further research sources to find out how well-practiced this is in care facilities (but sadly, I do not doubt for one second that this is some disgusting underground secret that families are totally unaware of). The NPR topic description includes the following, "..."Show Code," "Hollywood Code" and "Light Blue," a Slow Code happens when a terminally-ill patient goes into cardiopulmonary failure. The medical staff goes through the motions of attempting resuscitation but do not make a sincere attempt to revive the patient. Dr. Gazelle maintains this occurs because the attending physicians has not written a DNR order or the patient's family has requested that "everything be done" to save the patient, but the doctor decides that the patient can not expect a quality of life that warrants sincere efforts at resuscitation." Read the full transcript of the interview HERE
Unsure whether it is a memory that grew from reading this article, but I faintly recall a mention of this code during failed resuscitation efforts in my own home in November 2012. There will be more on this topic, but in the meantime... please be aware and prepared to advocate for your child or anyone else in your life that falls under circumstances which may prompt this code.