Tuesday, August 14, 2012

Intubation and Life on a Ventilator is NOT Torture or inhumane

     One of my, distant friends posted a link to this article on Facebook, and this is really her view and unfortunately the view of so many people and most of the medical establishment. I have yet to figure out why intubation/ ventilation is considered an extreme measure. It doesn't seem extreme or all that painful at all to me. My nephew Samuel doesn't seem bothered by it at all from what I can tell. It just seems like it would be a ton of work for mom and dad. The article wants to stereotype parents who fight for their kids against the medical establishment as all misguided religious zealots who are hopelessly wanting a miracle. I realize every case is different but I also see bea
utiful children that are enjoying life with smiles and giggles that wouldn't be here today if they weren't given that chance. My thinking is why not try ventilating. They can die on a ventilator too, but maybe they won't and maybe miracles can still happen. This article irritated me. I do know there has to be a balance and each case is different and only the parents and Drs as a team can determine the best course of action and hopefully work together for the best outcome but I think in the case of Thanatophoric dysplasia it definitely is an uphill battle for parents against the medical establishment. It is so awesome to actually see what these little guys can achieve when given a chance. 

The article I was upset about is here: 
Parents who believe in miracles 'torturing' dying children, doctors warn

      My sister-in-law would be considered one of those religious zealots mentioned in the article who fought the medical establishment to intubate Samuel. He was born a Thanatophoric dwarf which is a condition considered incompatible with life. 
Very few of these kids have been allowed to live because this is the viewpoint of the medical establishment and in many hospitals and their Dr's will refuse to intubate these children and most parents will not put up a fight. My sister-in -aw is now writing a book about her ordeal Called a "Miracle in My Living Room"

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