Another One

November 16, 2008 at 4:46 pm Leave a comment

How is it possible that yet again I am in contact with someone who is pregnant with an ARPKD baby and has been told there is no hope for survival. Another ARPKD mom forwarded me information for a woman in a very small town in the south who is about 37 weeks pregnant with an ARPKD baby. Her hospital does not have a NICU and she has not yet spoken with a pediatric nephrologist. She had to drive over 2 hours from her house to see a perinatologist. So far all of the doctors she has seen have given her baby no hope for survival.  She even has some amniotic fluid, a level four. And her baby moves around a ton. And yet there is no hope for survival. And they told her there is not need to even deliver at a hospital with a NICU. That won’t make a difference. This is just so frustrating for me. And just so sad. I have given her a lot of information. I only hope not too much information. I have also given her my opinion on a lot of things, which I hope is okay. I really feel that a C-Section is the best thing for the baby. I also think that she should deliver where there is a NICU. I also feel that everything should be done to try to save this baby for as long as possible.

And then there is the hard stuff I felt I needed to tell her. Like having a photographer present in case the baby does pass away. That way they will have pictures of the baby and won’t regret it later on. And then about having an autopsy done and DNA for future pregnancies.  

I am happy I am here for people like this woman. But I am so sad that anyone has to be in this situation. For me I hate that my boys have ARPKD, but am so thankful they are alive and on the milder side of this disease.  We never had to make any tough decisions like this woman might have to make and for that I am grateful. I just hope I have given her some help and possibly some hope. And I truly wish there is hope for this baby.

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Another One Letting Go

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