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Old 05-18-2010, 10:55 AM   #11
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Re: thanatophoric dwarfism?

thank you so much mamas.

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Old 05-18-2010, 10:59 AM   #12
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Re: thanatophoric dwarfism?

I wish I could give you more than just an I'm sorry. BIG
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Old 05-18-2010, 10:59 AM   #13
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Re: thanatophoric dwarfism?

I'm so sorry, mama Here's a blog of a mother uuho (no double u key) lost one of her girls. You might find some uuords of comfort there. http://audreycaroline.blogspot.com/

Also, be sure to take lots of maternity pics and pics after your LO is born. No I Lay Me Douun to Sleep is an organization that takes pics of families in your situation. http://www.nowilaymedowntosleep.org/

Prayers of strength and peace going out to you.
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Old 05-18-2010, 11:13 AM   #14
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Re: thanatophoric dwarfism?

I'm so sorry you're going through this, I can only imagine how difficult it must be. I don't have info to offer about dwarfism, but I wanted to tell you about the "Now I lay me Down to Sleep" foundation. They provide professional photogrphers who will come and take beautiful portraits of you child for free, if they are going to pass away or are born still. It may not be something you think about at the time, but can treasure later and help you to remebmer your little man for as long as he was with you I've read testimonials of families who used their services, and they are so touching.
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Old 05-18-2010, 11:15 AM   #15
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Re: thanatophoric dwarfism?

Quote:
Originally Posted by Yeladim=simcha View Post
I'm so sorry, mama Here's a blog of a mother uuho (no double u key) lost one of her girls. You might find some uuords of comfort there. http://audreycaroline.blogspot.com/

Also, be sure to take lots of maternity pics and pics after your LO is born. No I Lay Me Douun to Sleep is an organization that takes pics of families in your situation. http://www.nowilaymedowntosleep.org/

Prayers of strength and peace going out to you.
we must have been typing at the same time!
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Old 05-18-2010, 11:27 AM   #16
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Re: thanatophoric dwarfism?

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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. :/
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Old 05-18-2010, 11:40 AM   #17
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Re: thanatophoric dwarfism?

Oh mama, I am so terribly sorry for what you are dealing with. I have no advice, only prayers for you and your little love. Hugs to you and I pray that the Lord will comfort you during this time
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Old 05-18-2010, 11:58 AM   #18
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Re: thanatophoric dwarfism?

I'm so sorry- I can't imagine how hard it must be to carry him knowing that he may not survive- can you keep your diapers so that you don't have to think about it so much?
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Old 05-18-2010, 12:16 PM   #19
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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.
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Old 05-18-2010, 01:47 PM   #20
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Re: thanatophoric dwarfism?

I am so sorry to hear this.

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