July 16, 2010 at 9:42 am Leave a comment

I’ve been thinking a lot about how I feel so lucky we didn’t have to make any choices about whether or not to have more children after the ARPKD diagnosis.  I am also glad that we did not have a prenatal diagnosis of ARPKD and that the doctors never told us there was no hope for Gabe. What saddens me is that there are so many doctors out there who give no hope for survival. What I don’t understand is how they can actually say this. I’ve asked the guru in the field many times how the doctors know there is no hope and how they know that there is no lung tissue. Her answer is they just don’t know. I do know there is one mutation of the gene for ARPKD that is almost always fatal and even with intervention these babies die.  And I do strongly believe that a parent has a right to make whatever decision they feel is best for their child as far as if and when to put their child on the ventilator and if and when to take them off. But what is frustrating is that I am not always sure that all parents are well informed to make this decision and that the doctors are not helping the situation. For us there were no decisions that needed to be made. The thing is though that if Gabe had not been put on a ventilator or taken off after a day or so he would have died. That thought scares and saddens me. I am grateful the doctors were not thinking ARPKD and were not thinking there was no hope for survival because they then tried their hardest to save him and didn’t even think about taking him off of the ventilator. And luckily his kidneys started functioning and he was urinating and his lungs did develop.

Because Gabe was our third son and we knew before he was born that he would be our last we never had to think about the decision to have more children. But we did have to decide on our own to have our older two boys tested. The thing that angers me is that all of the doctors out there told us not to worry about our older boys. Once we found out that Gabe had ARPKD and that it was a genetic disease we asked about our older boys. And everyone’s thinking was that they were “healthy” because they had no symptoms of ARPKD. At the time they were three and six. Now luckily for us our doctors had taken both of their blood pressures and they were both normal. The sad and frustrating thing is many pediatrician’s do not check children’s blood pressure until they are four or five. So you could have an older child who appears “healthy” but has never had their blood pressure checked.  When we decided to have Max and Nate tested Max had no symptoms. We were actually thinking there was more of a likelihood that it could be Nate since he was three and thought that since Max was six there was no way he had it. We were shocked when the radiologist said Max’s kidneys were echogenic and slightly enlarged. And we were devastated. That was a harder diagnosis for us than Gabe’s mainly because Gabe was born sick and we were expecting bad news.  I just feel there are so many doctors out who are misinformed on this disease and just do not know enough about it. I feel that all parents should have all of the information about ARPKD before they make any type of decision. They should have all of the facts before they decide to not save their baby, or to take their baby off of the ventilator, or to decide to not have their older child/children tested.  Because how can anyone make the best decision if they do not know all of the facts.  There are just too many choices out there that need to be made surrounding this disease and they should only be made when you know all there is to know about this disease.


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Three Monday Memories (Sunday night for Monday!!)

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July 2010
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