Late Term and Child Loss

My baby has anencephaly & a sever omphalocele

Just hoping to find other moms who are carrying a baby with anencephaly. It is rare that mothers choose to carry a baby with this fatal condition, so I am praying I find some.

For those that don't know, anencephaly is a fatal condition in which the skull doesn't form- so brain is exposed and amniotic fluid damages it....and an omphalocele is when the organs are growing on the outside of the body.

I have a blog:

God Bless, Kelsey

Lilypie - (wpJS)

 Kelsey Johnston's photo.  image  image 
Lilypie - (6yLP)

Re: My baby has anencephaly & a sever omphalocele

  • foxxy1foxxy1 member

    Hi Kelsey, 

    I didn't have experience with that but I just wanted to offer you my support and love. *HUGS* 

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  • Hi. I don't have any experience with those conditions and CTT. I know a couple people who chose to terminate, one due to anencephaly and one due to an omphalocele, but no one who had both.  I know Auki13 carried her Annabelle to term with anencephaly so you might want to page her. I am so sorry for your little one's diagnosis. T&Ps. 
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  • imagefoxxy1:

    Hi Kelsey, 

    I didn't have experience with that but I just wanted to offer you my support and love. *HUGS* 


    Same and I wanted to assure you that even though many of us don't have experience with this, we are here to help you through. Come here for support whenever you need it! 

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  • Hello I am so sorry you are going through this. I do know quite a few moms who have carried to term their babies with anencephaly.

    Here are a few of their sites that migth help you. This friend delivered her daughter early.

    Also Hats for Hannah on Facebook she is a friend who makes all different size hats for babies that are either premature or born with anencephaly. Her daughter was born with it and lived for 5 days.

    There is also another group that is private on facebook, The facebook group is called

    In my loss group I know of 5 woman who all had babies with anencephaly. They all carried to term. Good luck and I hope the info that I gave you will help with your future.

    We are all here for you as you go through this. You are not alone!!


    DS- Brenden born 11/13/93 Missed miscarriage on March 6, 2007 @ 9 weeks D&C on March 8th 2007. Riley Annalise born 2/25/08 ( 3 weeks early weighing 8 lbs 12.8 oz.) Chemical pregnancy 3/2010. Sydney Adriana born sleeping on 9/30/11 weighing 10lbs 3 oz at 38wks 4 days. Trinity Alivia born via c section at 36 wks 4 days weighing 9 lbs. 5.7 oz. She is our amazing rainbow baby!!! Lilypie Angel and Memorial tickers Lilypie First Birthday tickers PGAL buddy drvst8
  • Hi Kelsey, I am so sorry you find yourself here. We are here for you as you continue on this journey.

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  • Kelsey,

    I am so sorry you are going through this.  It breaks my heart.  It is wonderful that you have support from your church during this difficult time.  I also hope that you can find comfort and support here.   

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  • So sorry that you find yourself on this board.  I don't have any experience with these conditions, but please know that the women on this board are a wonderful support, even if they have not shared your experience.  I hope that you find support and comfort here.  T&P for you and your little one!
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  • Kelsey,

    I am so sorry for what you are going through.  There is a mom on the parenting after a loss board who has been through this, her name is pennynjon.  Here is her blog, you may want to page her there as well:

    And as someone else mentioned, Auki13 is a good resource.  

    Careyalis also carried her daughter Avery to term, she also had a fatal diagnosis, though it was a different one.  Here is her blog as well:

    Also, this series ran in the Charlotte, NC paper about a couple facing this:

    It is a 4 part series.  The second is:

    I am having trouble finding the other parts, but here are two other video pieces:

    Here are all the stories I could find about them: 

    If you look to the right on the first story, there are a number of resources.  One of them is Be Not Afraid, which might be helpful.  That site has a lot of stories and local support as well.

    As others have said, we are all here for you as much as you need.  I am so sorry again for all you are dealing with.  




    We are so thankful that our second daughter, Lillian Elizabeth "Lily", was born healthy and happy on February 11, 2013.  We love her to pieces.  

    We lost our first daughter, Hannah Grace on May 4, 2011.  She was buried on May 14 during a beautiful service at my home church. We are grateful that if she could not be here with us, that she is healed and whole with the Lord. We look forward to the day when we will get to meet her. We love her so much.

  • Auki13Auki13 member

    First of all, I am so sorry that you are going through this.  As pp mentioned, I carried my daughter Annabelle (who had anencephaly) until I went into labor naturally at 34 weeks 4 days.  I had severe polyhydramnios and it is most likely the reason I went into early labor.  Please feel free to PM me to ask me any questions you would like.  It is a difficult journey, but I was able to find a bit of comfort talking to others who have had similar experiences as mine.  I was able to prepare a lot for when Annabelle was born and through research and talking to other moms I have a good amount of ideas that helped us cope with the meeting of our little one, and unfortunately the saying goodbye.  I don't want to give you too much information right now, because I know that can be overwhelming, but I am more than willing to share with you whenever you are ready.  You will be in my thoughts and prayers...

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  • I'm so sorry for your diagnosis!  My daughter did not have anencephaly, but I also ctt and can very much relate to your situation. I've been a little Mia on the board, but I would be more than happy to talk with you and share my experience if you would like. Hang in there and huge hugs!!

    My angel Avery- 2/16/12, My rainbow Blake= 3/4/13, Joyfully awaiting #3 5/11/15
  • Sending (((HUGS))) your way.  My situation was different, but I hope that you're able to find some support here with us.
    Mom to Eliott Alexander, born sleeping at 37 weeks on 8/13/10. Most of us only dream of angels - I held one in my arms.
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  • Hi Kelsey, I'm so sorry you are going through this.  We just had the 5 year angelversary of the day we said hello and goodbye to our son, he had a Giant Omphalocele.  There is a group (it used to be called MOO's - Mother's of Omphalocele) but I think it's called something different now), there is also a group for O Angels, if you would like more info please send me an email - amy1189 at gmail dot com.  I do not check the bump very often, haven't been on in months but something told me to log on tonight.  Thinking of you and your sweet little one. 


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  • My son had anencephaly/acrania. It's a tough diagnosis. We are now part of a genetic study and it helps me cope. Good luck to you an PM anytime.
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