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Looking for other moms who's babies have anencephaly and wish to continue pregnancy.

enstaylorenstaylor member
edited April 2016 in High-Risk Pregnancy
I have never posted in one of these before but I feel like I am the only person in the world going through this. We just found out at 16weeks that our baby girl has anencephaly. They said that there isn't even much brain stem. She also has a severe cleft lip, an omphalocele (organs growing outside her body), and spinal bifida (along with other spinal things and a bone sticking out) all of this sounds so scary. I could never live with the guilt of getting an abortion(although in this situation I am not judging moms who made that choice) So our other option is to carry her to term if she makes it that long. I think her case is pretty severe and I wanted to know if anyone had other problems besides the head that made it to a live birth. I can't see how she could live outside of me like that. I would love to hold her but I don't want to get my hopes to high. I have been so upset I haven't been able to keep food down for the last 36hrs. I just need to know I'm not the only one out there.
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Re: Looking for other moms who's babies have anencephaly and wish to continue pregnancy.

  • mamabear381mamabear381 member
    I sympathize with your journey and send you prayers and strength.  I read an amazing story on Facebook about a family's bucket list for their little guy who suffered from the same unfortunate defect.  It's feed is Prayers for Shane.  I hope this story may help you find some peace and light to your situation and maybe you cod message the family if yoi had questions.  Good Luck and God Bless
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  • MsKayDeMsKayDe member
    My daughter was diagnosed with holoprosencephaly when I was 16 weeks and she also has a heart defect. Single ventricle heart disease. I was told multiple times to abort and that she wouldn't even make it to birth. I chose not to abort.  The choice is never easy but do what's in your heart. Always do what you feel is best for your baby. There are no right or wrong answers. I cry after every doctor visit with her heart doctors but I hold on and know that I'm doing what's best for her. I hope you find peace and comfort and reach out to me if you need anything. 
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  • enstaylorenstaylor member
    Thank you guys for you comments and advice. I was in such shock when I had posted this. I am now 21weeks. I have been so thankful I continued the pregnancy. I feel her kick and move all the time. My doctor thought she wouldn't make it long but she is doing great. Her heart is strong. She has craniorachisis. I have never found a case that a baby with this lived. I have joined a few support groups and it has helped me a lot. I just try to make as many memories with her as I can while she is in my womb and will take pictures and dress her when she is born. She is still my baby girl no matter what she looks like.
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  • FergiegalFergiegal member
    Hi, I am so sorry to hear this. But, I believe you are doing the right thing in carrying her to term. You're a very strong woman. My prayers are with you and your baby girl. I don't mean to be insensitive by asking this, but was it because of low folic acid intake? I'm just not familiar with anencephaly, which is why I'm asking. Stay strong, and always have your faith.
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  • ampaintingampainting member
    I'm so sorry for your grief. I can't imagine how you must be feeling right now.

    Try LiveActionNews.org. It is a pro-life website (I don't know how you feel about that and I'm not saying you need to read any of the articles about the politics of it) but there are also tons of articles about parents with anencephalic babies. Some of their babies made it to birth, some didn't, but you'll find the common denominator among the stories is that none of them regretted their decisions, as that choice allowed them to spend what time they could with their children. I hope you'll be able to draw strength from these stories. I've included a couple of links below.

    https://liveactionnews.org/miracle-baby-born-with-anencephaly-defies-the-odds-turns-one/
    https://liveactionnews.org/couple-expecting-baby-anencephaly-peace/
    https://liveactionnews.org/couple-enjoying-every-moment-possible-with-their-daughter-with-anencephaly/
    https://liveactionnews.org/baby-anencephaly-shocks-nurses-lives-27-hours/
    https://liveactionnews.org/parents-of-baby-diagnosed-with-anencephaly-are-helping-him-live-life-to-the-full-from-the-womb/
    https://liveactionnews.org/baby-anencephaly-inspires-movement-kindness/

    You might also be interested in this organization: https://www.nowilaymedowntosleep.org/ 
    They help connect parents of children with fatal diagnoses to photographers who will document their babies' births.

    Once again, I'm so sorry for your difficult time. My thoughts and prayers are with you and your family.
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  • TollerToller member
    I think you're  amazing for being strong enough to continue. You're really doing right by your child. Many prayers that you all find peace and healing.....
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  • SSCmommaSSCmomma member
    Thoughts and Prayers
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