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Old 05-18-2010, 12:16 PM   #19
ma-meem's Avatar
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Formerly: ecoMama2b
Join Date: Feb 2010
Posts: 2,778
Re: thanatophoric dwarfism?

The high risk periontologist, OB, radiographer and geneologist all told us that there is no survival rate. He will pass away within minutes or hours. You can get the babes intubated, and have a trach put in so they can breathe, and feeding tubes but this just holds off the inevitable. As soon as they are taken off life support, they die. Babes with TD also have seizures, can have heart attacks (the ribs constric the heart), little brain activity. There is one case that is long term, he is 4. Most of the parents choose just comfort measures after they are born...which is what we will do. There is nothing the docs can do.

As for how long I have, it's hard to say. Some mamas have carried to term. Some mamas water breaks 30-34 weeks due to amniotic fluid build up (he babes cannot swallow, so the fluid just builds up). I'm already measuring 4 weeks big.

I think that Im going to save all the dipes, and then after he is born/passes, Im going to do a draw or somthing for a mama/mamas who need them, in my babes memory. I have all brand new grobabys, lil joeys, prefolds, wool, softbums etc. The mama I had sent the FFS dipes to is going to change her FB...thanks mama.
mama to 5 boys and 1girl!, married to my BFF! doula/ childbirth educator/ LLL Leader

Last edited by ma-meem; 05-18-2010 at 12:27 PM.
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