May 27, 2009 at 8:27 pm Leave a comment

I learned about another baby who died in April from ARPKD. The parents were given a death sentence the minute the baby was diagnosed prenatally and the doctors did not even try to save him.  When I emailed the mom and told her I had two boys with ARPKD she emailed me back and said she didn’t mean to ask a silly question but how could I have 2 living boys with ARPKD when it was such an aggressive disease neonatally. She also has two older children who have not been tested and the doctors told her there was no need to test them and there was absolutely no chance of them having it and a 66% chance of them being carriers, both misinformation.  The lack of information in 2009 by doctors is astounding to me.  There is another mom who I am in contact with who lost a baby recently as well who did not have amniotic fluid. I told her about someone I know who did amniotic infusions who now has a six year with ARPKD.  This woman’s doctors said amniotic infusions cannot help a child with ARPKD. It’s frustrating to me that they wouldn’t at least try them.  If these doctors think they cannot help why would it hurt to just try it.  I know I’m not a doctor and don’t know everything there is to know about ARPKD but I just don’t understand how doctors don’t even try and just let these babies die. It brings back so many memories of when Gabe was born and what we would have done if the doctors have given us no choice. I say this over and over but if Gabe had not been put on a ventilator then he would have died. I think I am still so angry about the whole process of how doctors treat these mothers and don’t even try to get them all of the information they need to make the right decision.


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Mother’s Day yet another jinx

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May 2009
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