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NF Community NF Support Forums General & Support My Still born Baby Diagnoised with NF1
 

My Still born Baby Diagnoised with NF1



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02/01/2008 17:17
prvenkatr
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I Have NF1, multiple plexiform Neurofibromas and undergone surgeries. My mother had also neurobibromas and died of neurofibrosarcoma 20 years back. Now my wife is pregnant(it is unplanned pregnancy), and we found the baby has also inherited NF1 gene(Mutation test done at UNiversity of Alabama,Birmingham), she is 16 weeks pregnant and we are in a dialama to continue with or to terminate the pregnency. Still all the treatements in NF1 are in stages of research only. Some good amount of effort is taken at Indiana University, but still the furure for treatement is in probalitity. We are confused and worried a lot whether to continue or to terminate the Pregnency
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06/18/2008 05:31
rebecca2
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My parents also had that decision about terminating the pregnancy. If my parents had terminated the pregnancy I wouldn't be here today. I am now 29 years old. I have a slight learning disability. I have no other complications due ot the NF.

I miscarried in Oct 2007. My fiance and I know the risks of us having kids together. If i am able to carry the baby to full term, we know the risks of what could happen.

We are going to lose that child no matter what.

You need to ask yourselves this question. Could you really live with yourselves if you did terminate the pregnancy and the child had turned out without any complications due to NF.

Like i said before there is a 50/50 percent chance of how serious the child's case will be.

Mine is fairly mild. I only have a learning disability because of it.

I don't mean to seem like i am lecturing you or anything.


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06/18/2008 18:39
auckland
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Hi

I am very sorry to hear of your dilema. Although I don;t have NF, my daughter does. I have thought alot about the decisions she will need to make, especially whether to terminate or not. Either way your decision is hard. The worst thing about this condition is the unknown !!!! as you know , no one can tell you how NF will be apart of your childs life. Unfortunately its one of those decisions you wish someone elso could make for you, What ever decision you make, you need to move on with life and believe that at that time in life and for YOUR right reasons you choose that path. So don;t have guilt with your decision , you didn't ask for NF to be a part of your life, you are only trying to live with it the best you can. GOOD LUCK, I shall be thinking of you.



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06/20/2008 15:29
ctkity21
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what do you mean by... we are going to loose that child no matter what....

i thought its not neceasrily deadly and most cases aren't deadly???


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06/21/2008 04:51
prvenkatr
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AT last we had terminated 3 months ago.... It is very painful for my wife and me.... We are planning for a PGD...

But only we know how stressfull was/is the past few months.... still when i write this am emotional and i ....

I Thank u all for the support...

Post edited by: prvenkatr, at: 06/21/2008 04:52

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06/27/2008 05:31
rebecca2
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I meant to say that we are going to love that baby no matter what sorry. i was doing something else while i was typing that.

If my fiance and I do have another child. And that child has NF. We are going to love that child no matter.


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