Abby here. I can't tell you how many parents I have met that have said that they were at another hospital with their child and told that their child was not going to make it and that they should prepare for the “final days”. These parents took matters into their own hands, got copies of their child's records and called Children's Hospital here in Boston. These parents that I have met (around 8 so far) were not all at small po-dunk hospitals. Some came from Chicago, LA, and Miami. These children are now doing fine and are home or getting ready to go home.
It makes me so angry that some doctors will actually tell parents that their child is going to die rather than admit that they have reached the limit of their ability and it is time for the child to go somewhere else. I have heard horror stories in the time that I have been here of doctors bumbling their way through a treatment, getting all of their information from outdated text books. Some times the doctors even do more harm than good.
I know that I'm not perfect and I can't expect anyone else to be perfect. Yet, if you are really going to shatter a person's world with the worst news possible, make sure you are right.
So everyone that reads this if you are dealing with a sick child or know some one who is, follow your gut. If you feel like your child is not getting the care they need or if you don't believe the doom and gloom story that you are being told, start researching. Look on line, call people, look on Yahoo groups for other families and do what ever it takes to get the best care possible for your child. The right hospital and doctor do make a big difference.
More often than not I have found that what I feel in my gut is the right way to go. As parents we know these children better than anyone else and if you feel in your gut that something isn't right, then most probably are your right.