False Hope

April 30, 2009 at 9:53 pm Leave a comment

Matt thinks when I talk to these moms who are pregnant with babies with ARPKD that I am giving them false hope. He thinks if they have no amniotic fluid and the doctors have no hope then I shouldn’t be giving them any hope. My feelings are so many doctors out there do not have enough information about ARPKD and immediately give the worst case scenario. I just want these moms to know there are other possibilities and other options.  I know of a few cases of amniotic infusions that have helped but I also know of so many doctors who refuse to even try this and say it doesn’t work. I also know of a case where the parents were given no hope and told numerous times to take the baby off of a ventilator and he is now 7 years old. There is another family I spoke to last year that was given no hope and had no amniotic fluid and the baby came out breathing on her own. I just don’t understand how the doctors know for sure the baby will not survive. I often think if the doctor had told us that Gabe would not survive and to not even try to save him or to take him off of the ventilator, what would our choice have been. And if he did not go on the ventilator he would have died.  The thing I always say is how different ARPKD is in every child.  A doctor cannot possibly predict what the outcome will be.  There is this one particular mutation of ARPKD that is almost always fatal except every once in a while it’s not fatal.  So how do these doctors really know.  And what is so wrong with me giving me these families as much information as I can and some hope to grasp on to. I am also very realistic with them and tell them about having a photographer present in case the baby doesn’t make it and to have an autopsy done and DNA testing for future pregnancies.  Matt and I deal with things in such different ways and it is frustrating that he gets angry with me for giving these moms hope or as he says false hope.  He just doesn’t understand my need to talk to these moms and to try to help them as much as I can. It is one of the only ways I feel like I am doing something important with this diagnosis.

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