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ANENCEPHALY / OMPHALOCELE

kelseyjohnstonkelseyjohnston member
in Late Term and Child Loss

Hi Ladies,

I'm not on this website very often, but I wanted to reach out to women who may have experienced a loss due to anencephaly.

Anencephaly is a nueral tube defect in which parts of the brain are absent and a skull doesn't form. In June, I found out my baby had anencephaly and we chose to carry her to term. She also had an omphalocele (organs growing on the outside of her body) and a heart defect which showed she only had 2 chambers.

I gave birth to my daughter, Kassidy Briana, on November 5, 2012 when I was 34 weeks with her. She was stillborn. Her funeral was on November 10th.

If any woman is facing this diagnosis, I would love to be of any help possible!

 My blog: www.kelsjohnston.blog.com

Facebook page: www.facebook.com/KassidysStory

God Bless!!!! - Kelsey

Lilypie - (wpJS)

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

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Re: ANENCEPHALY / OMPHALOCELE

  • buggirl72buggirl72 member
    I just wanted to say that I am sorry for your loss (((hugs))).  I do not have experience with this but wanted to thank you for reaching out to women in similar circumstances.

    The day the Bump died - Jasper is wise
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  • jbranden12jbranden12 member
    I am so sorry for the loss of your Kassidy Briana. This is an amazing group of women and I hope you can find some support here.


      Our Angel Patricia born sleeping 3/30/12 at 31 weeks
    Our Fighter Anna born early 1/8/13 at 26 weeks
    Hoping to bring home #3 due 9/9/15
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  • jess123456jess123456 member
    Thank you for sharing your blog and I am so sorry for the loss of sweet Kassidy Briana. My daughter also had a fatal genetic diagnosis and we lost her in September.
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  • yosemitemomyosemitemom member

    Hi Kelsey. Thank you for sharing your story and I am sorry for your loss. Kassidy Briana is a beautiful name. I lost my daughter to a severe combination of abnormalities (mostly neurological, but her heart was involved too). I am so sorry for your loss.

    I am a mother to two daughters. Our first is a lovely and vibrant three-year old. Our second, passed away during the sixth month of pregnancy (June 2012).
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  • ally2011ally2011 member

    I am so sorry for the loss of Kassidy Briana....beautiful name!  I remember you posting here in the beginning and have thought about you on and off since then....I posted as many resources as I could think of you for you at the time.  I want you to know your story inspired me and I think it is amazing that you are offering support to other moms.

    The grief journey is long and there are many ups and downs....it will come at weird times and when you think you are doing better....just know that is completely normal.  We are all here for you as much as you need.

    Hugs,

    Jenn 

    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.


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