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Old 05-18-2010, 12:27 PM   #16
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Re: thanatophoric dwarfism?

Originally Posted by ecoMama2b View Post
Im 24 weeks pregnant as of tomorrow, and at my 20 week US we found out that our baby has thanatophoric dysplasia. It is a lethal form of dwarfism, where his rib cage is so small that it cannot support his lungs, so he will die shortly after birth. We are going to carry him as long as possible, but apparantly a lot of mothers gain a lot of extra fluid with this and hence their waters break early. Has anyone else gone through this? I know have a neg. feedback on here for a FFS pack I gave away because I was too depressed to do anything until the last couple days and the mama got the package late, and now I have to sell all the newborn dipes Im getting in the mail. It's so hard carrying him knowing he will die right after birth. If anyone else has experience dealing with this, I'd be greatly appreciative to speak with you.
Oh gosh! I am sorry for your impending loss
Are there special measures the hospital has for you and baby? I would ask them. How much more time did they say you have?

And can't she take the neg. feedback back after she knows that!?, I mean its FFS for goodness sake! I always give extra time because I figure they are going out of their way for me. Sometimes I don't GET any FB back when I recieve my FFS because I think some don't believe FFS is WORTH feedback. :/
mom of Sophia (09/2005) and Iris (6/2010) + one on the way
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