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EverydayFamily works to provide articles and information for every topic and stage, from preconception, through pregnancy, and beyond. We also know that sometimes, you still have questions. We’ve created forums related to all our sections, to allow members to share questions, advice, and thoughts. And don’t miss our specialty forums, where you can share your own trying to conceive and birth stories, plus get to know more about other members.

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Forums » Pregnancy » Emotional Health

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2/10/2013, 2:46 PM

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SurlyCurly

Posts: 1 Joined: 2/9/2013 Last Post: 2/10/2013

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Detached Due TO Amniocentesis

My fiance has Neurofibromatosis (NF), or von Recklinghausen disease, is a genetic disease in which patients develop multiple soft tumors. These tumors occur under the skin and throughout the nervous system. To find out more about NF refer to this link http://medical-dictionary.thefreedictionary.com/neurofibromatosis. Being pregnant with his baby is a 50/50 chance the baby can be born with NF. When we went to see the Geneticist he ask us if we were ready to terminate if our baby had NF or any birth defects. This was when i was four weeks pregnant now i am going on sixteen weeks and this Friday I am going in for the Amniocentesis test to find out if baby is sick. I have to wait another two weeks to find out results. So I have really not been to happy nor have I created a bond because of this.

ANY FEEDBACK IS WELCOMED.

2/10/2013, 5:48 PM

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Ashley

Posts: 1 Joined: 2/10/2013 Last Post: 2/10/2013

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Re: Detached Due TO Amniocentesis

My husband also has Neurofibromatosis. We just had our first baby, a boy named Elliott James, on November 13th, 2012. We went in for genetic counseling before conceiving, and were never told to anticipate ending the pregnancy. We decided we would never abort just because of the NF, and we didn't find out if Elliott has it through an amnio. I figure, if his mom had aborted I wouldn't have my husband.

How bad does your fiance have it, as in, does he have a lot of fibromas? Is it really obvious? My husband has fibromas under the skin but they didn't develop until he was in college. They are not painful and don't bother him, we just get them measured ocassionaly. So far Elliott seems fine except he has 2 cafe au lait spots, our pediatrician consulted with a specialist in the area and they decided just to check him every few months but told us not to worry and that he doesn't need to be tested right now. There can be learning disabilities associated with NF, but since you know to watch for it you can catch them early and get your child a speech therapist, tutor, etc.

I would say don't do the amnio unless you or your fiance feel the need to know right now if he has NF. Your baby could live a very normal life, and you will love it either way if you choose to. I would recommend you look into NF and read all you can about it, it made me feel much better.

Also, I had an amnio at the end of my pregnancy to see if he was ready to come out because I had high blood pressure, and it was so uncomfortable and always has some risk to it. I hope I don't sound preachy, I know there aren't a ton of people out there with NF and when I saw your post I just had to share our experiences. Please let me know if you want to discuss anything :)

2/11/2013, 9:57 AM

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Smilesandchild

Posts: 25 Joined: 10/21/2012 Last Post: 6/12/2013

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Re: Detached Due TO Amniocentesis

I'm not familiar with NF but my bf is prone to unexplained seizures. We were concerned about the possibility of the baby having seizures too. But we never considered abortion (though I know that the minor seizures we experience aren't as bothersome as NF may be) even if we did/do find out before our son arrives.

I know it's different but I agree with Ashley. Your child can have a great life if given the chance. The baby wasn't asked to be concieved and they are missing out on a life at all because you want them to have a "low-risk" life.

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