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"