More “bad” doctors

October 15, 2008 at 8:54 pm Leave a comment

I did a call tonight to a family who just had a baby with ARPKD and had called in to the Foundation to find out more information. Their baby was born just over 7 days ago with “no hope for survival”. That statement in and of itself really infuriates me. How does a doctor truly know that there is “no hope for survival”. It angers me that these doctors are making these decisions before the baby is even born. What frustrates me more is this is happening everywhere and all the time. Especially in this day and age with the technology we have to save babies. I understand they do not want to try so hard to save a baby and cause pain and stress on the baby and the family if ultimately there is no chance. But ARPKD is not a terminal disease and no one knows the outcome. Every child is so very different.

This family that I spoke with happens to live in a small town. The doctors were not going to even put the baby on a ventilator. They told the parents they would clean the baby up and hand her to her parents and she would die within 5 minutes.  This is how the parents had to go through the last few months of their pregnancy. With no hope and the thought of only holding their newborn to then have the baby die in their arms. Then miraculously this baby came out crying and breathing on her own. Now this really doesn’t happen too often, especially without amniotic fluid for so long. We don’t know how long I didn’t have fluid for but Gabe needed to be put on a ventilator for one week after he was born. If the doctors had not tried to save him he would have died. There are so many babies out there that needed the ventilator and are now doing okay. There are so many families who were told there is no hope for survival yet their children are alive. And then there are so many families out there who were told there is no hope and they shouldn’t even try to save the baby and their babies died. I often wonder how many more babies would there be living with ARPKD if every doctor tried to save them and gave them a fighting chance. How can we educate these doctors about ARPKD? How can we save more babies with ARPKD?


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