No Hope Given

October 28, 2008 at 9:53 pm Leave a comment

Today I spoke to yet another mother of an ARPKD baby who was given no hope of survival.  This baby unfortunately did not survive. This was my third conversation with a family within the last month that doctors did not give any hope and did not even try to save.  This is so depressing to me and just so stupid! I don’t get it. Why not try and save the baby. Why not?????? This particular family lives in a big city and saw 24 specialists prior to giving birth and not one gave any hope. And these specialists included OBGYN’s, perinatologists, pediatric nephrologists, radiologists, neonatologists…..  The baby died 3 hours after she was born.  Not to mention the doctors refused to even try amniotic infusions and then refused to give the mother a C-Section and she endured 36 long hours of labor before the baby was finally born. And again it brings back so many memories. What would I have done in that situation if 24 doctors, or even just one or two, said to me there was no hope for survival and it will only prolong things and possibly cause the baby pain to even try. Would I have insisted? Would I have forced the doctors to put Gabe on the ventilator when they were telling me there was no hope. Gabe would have died if he had not been put on a ventilator after he was born. He would have died if they took him off of the ventilator after just 3 hours. I am so thankful for the doctors we did have. But I often wonder how different it would have been to have a diagnosis of ARPKD before he was born. Would things have been different. Would the doctors not have tried so hard to save him? How can we educate these doctors in all of these cities all over the world. We live in America in 2008 and doctors are still not even trying to save ARPKD babies. And it is happening all the time.  How can one person like myself educate these people and stop this from happening? How can we convince these doctors that all ARPKD babies deserve all the treatment possible to try to save them from the very minute they are born?

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