Quote from hiddencatRN
I had two back to back SIDS codes many months ago, and both children were not revived (and were beyond help when they came in anyway). I felt sorrow for the parents and the lost promise of their lives, but having taken care of children with anoxic brain injuries who DO survive being coded.....I'm glad they did not revive. Well, glad is maybe not the right word, but I firmly believe that there are worse fates than death.
I agree. Working in the hospital, I always found the most difficult cases to be those who would survive but would never be themselves again. The kid who was a normal 5 year old who developed an acute autoimmune disease which destroyed her neurological system and left her wheelchair bound, trach'd, G-tube'd and non-verbal and you knew would remain that way for the rest of her life (which could easily be a very long life) hurt my heart so much more than those who you knew wouldn't survive their disease.
Mostly, I am relieved when families come to a place where they can let go and say "it's time to stop." I remember taking care of a child with a highly malignant brain tumor several years ago- she was undergoing all the aggressive therapies for this tumor (despite there being a very poor prognosis) and was preparing for stem cell transplant. As fate would have it, she was admitted just prior to stem cell transplant with something acute (I forget what, exactly) that prevented her from proceeding. Over the course of several days, she deteriorated to the point of having to be transferred to the ICU and put on a vent. Once she was intubated, they were able to scan her and found that she had hemorrhaged and had started to herniate. We all felt so glad that she had parents who were strong enough to say "no more." She was transferred back up to the floor, extubated and passed calmly in her parents' arms.
I currently have a child with the same disease (a highly malignant brain tumor that has a survival rate of less than 10% when diagnosed in children under the age of 3) on my service and she is undergoing all these aggressive treatments right now... but they are absolutely destroying her. After every chemo cycle, she ends up hospitalized for a MONTH with severe neutropenia and ends up on IV antibiotics, fluids, electrolyte replacements, TPN, NG feeds, the works. She also ends up needing GCSF (a daily shot) for 5-6 weeks after every chemo. This is unlike anything I have ever seen in my 6 years in pediatric oncology and she is unlikely to survive.
If ever faced with a situation like this, I hope that I would be strong enough to say "enough is enough" and not put my child through these kinds of things to prolong his/her life but not preserve its quality.