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Old 05-18-2010, 01:58 PM   #21
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Re: thanatophoric dwarfism?

so sorry you are going through this....there are a few websites that are directed towards carrying a baby with a fatal diagnosis....

http://blooming-faith.blogspot.com/

this website I found when we were told our son might have T-18....and if you scroll down there are TONS of links on the right side....Be Not Afraid is one of them....this blogger also has a list of books to read as you process grief etc...

I am so sorry you have to go through this....I really don't have words....I will be praying for you and your baby boy! Praying for a miracle....

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Old 05-18-2010, 02:06 PM   #22
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Re: thanatophoric dwarfism?

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Old 05-18-2010, 02:11 PM   #23
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Re: thanatophoric dwarfism?



I am praying so hard for you.
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Old 05-18-2010, 02:22 PM   #24
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Re: thanatophoric dwarfism?

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Originally Posted by kannondicarpo View Post
My heart just aches for you and I cannot hold back the tears. I am also praying for a miracle. God is the Great Physician and the Great Comforter.
I totally agree. So sorry mama! Sending lots of and your way.
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Old 05-18-2010, 02:56 PM   #25
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Re: thanatophoric dwarfism?

I'm so sorry mama. I will keep your family in my prayers.
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Old 05-18-2010, 03:09 PM   #26
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Re: thanatophoric dwarfism?

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Originally Posted by kannondicarpo View Post
My heart just aches for you and I cannot hold back the tears. I am also praying for a miracle. God is the Great Physician and the Great Comforter.
Praying for a miracle. Please don't give up hope I have seen 2 babies born in the last year that we supposdly not going to make it and still going strong. One of them was one of our local news ancors I will see if I can find the story.

ETA: here is the article http://www.thepittsburghchannel.com/...94/detail.html
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Old 05-18-2010, 03:21 PM   #27
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Re: thanatophoric dwarfism?

My heart and prayers go out to you!
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Old 05-18-2010, 03:25 PM   #28
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Re: thanatophoric dwarfism?

Just wanted to say that I'm so sorry. I don't have any experience with this, but I do have experience with baby loss as my son was stillborn at 40 weeks a year ago. There are so many support forums, and I always recommend www.missfoundation.org. Perhaps there is a support group forum specifically for what you are experiencing. Thinking of you...
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Old 05-18-2010, 03:32 PM   #29
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Re: thanatophoric dwarfism?

My experience with this is as an NICU nurse several years ago - and the outcome for that baby was essentially the expectations you were given. His mama and daddy didn't know until around 30 weeks, and he was born a few weeks after. I don't remember how long they had with him after he was born, I think it was less than an hour. They had no family history or genetic links, they were told it was just random.

I'm so sorry mama. I wish I had wonderful words of comfort for you. I'll pray for that miracle for your baby and for you.
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Old 05-18-2010, 03:42 PM   #30
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Re: thanatophoric dwarfism?

I'm so sorry. I work with babies that were told they were going to die and they are still alive. I have seen them come home on hospice and were given a short amount of time to live. A year or so later they are off the vent and trach is taken out. God is the only one that knows. I will be praying for you during this hard time.
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