24 weeks... — The Bump
Late Term and Child Loss

24 weeks...

We found out the worst news of our life on Nov 11 at our anatomy scan. She has a very rare disorder (1 in 200,000-400,000) called OEIS. She has severe scoliosis (spine is basically bent in half), bladder and bowels appear to be connected, heart is enlarged or chest is small, and the intestines are outside in a sack. She isn't urinating and they don't know why so I have no amniotic fluid. We are naming her Elizabeth Rose. I have a 2 year old named Caroline. The Dr. believes I will go full term and she will live either a few minutes or a few hours. I'm due April 5. I am trying to enjoy each day I have with her, but I feel like I'm getting sadder with each passing day. I am dreading giving birth to her knowing I will lose her. This is such a nightmare.

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Re: 24 weeks...

  • BLPL101BLPL101 member
    5000 Comments Third Anniversary 100 Love Its Photogenic
    edited December 2014
    I feel like such a loser. How can this possibly happen to me? I am such a stickler for following all the rules of what you should and shouldn't do and this happens to me. I see my friends have healthy babies and they aren't as careful as me. I don't understand. I was absolutely miserable with morning sickness for months and I refused to take any meds because I wanted to make sure this baby was healthy. I'm just really angry.

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  • I'm so sorry to hear this news about your precious daughter Elizabeth Rose. I too got devastating news at my daughter's ultrasound after doing all the right things, and you're right, it's just not fair. One thing that helped me through the sadness was to make all the memories that I could during my pregnancy, since it could have been the only time I had with her. Something that I found later on that I wished I had found during my pregnancy was the All That Love Can Do Facebook group for carry-to-term moms. Please let us know if there is anything you need for support on this journey.
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  • Thank you! I will check out that group.

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  • I'm so sorry. You also might want to check out the book I Will Carry You by Angie Smith. She also has a blog http://angiesmithonline.com/audreys-story/about-audrey/
    Abigail Grace 9/7/10
    Nathaniel Willis born sleeping 2/6/14
    Felicity Hope 4/6/15

  • My daughter was born in 2013 with OEIS and I was told at every appointment (weekly) that she wouldn't make it and here we are 5 surgeries later with a beautiful girl....I know every cloacal exstrophy case is different but our stories sound very similar.
  • Big hugs and lots of prayers to you. I'm so sorry you have to go through this.

  • I am so sorry for the news you received about your daughter Elizabeth Rose - such a beautiful name. You and your family will be in my thoughts and prayers. So many hugs to you with all that you are experiencing.
  • I'm so sorry for your sad news. If I had known in advance that we would lose Ben I would have made sure we packed things that we wanted to have with us- things from home people had bought for him (blankets, clothes, stuffed animals).
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  • I am so sorry for the devastating news you received about Elizabeth Rose. My experience with the loss of our son was very different, but I would encourage you to enjoy your time with your daughter as much as possible, make memories, take photos, and treasure the time you do have with her, however long or short that may be. ((Hugs))
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    Me: 32 DH: 33  High School Sweethearts  Married 5/28/2005
    DS1 born 6/5/10 at 40 weeks via emergency c-section due to fetal distress and IUGR caused by placental insufficiency
    DS2 born still 8/28/13 at 32 weeks via emergency c-section due to a complete placental abruption - cause unknown
    Baby #3 on the way, EDD 2/29/16.  Originally twins, but we said goodbye to Baby B at 8 weeks.
  • I'm so sorry to hear about Elizabeth Rose. ((Hugs))

    I hope you find this to be a safe place as you work through this. I'll be thinking of all of you.

    BFP #1 March 24, 2010; missed m/c May 26, 2010 @ 12w 4d; D&E May 28, 2010

    BFP #2 Oct 20, 2010; My little boy was born on July 5, 2011

    BFP #3 April 30, 2013; Chemical Pg May 5, 2013

    BFP #4 Aug 22, 2013; It's a boy.  Loss discovered at 24 weeks on Jan 15, 2014 (cause CMV virus)    

                                  <3 We love and miss you Timothy <3

    BFP #5 April 6, 2014; missed m/c May 15, 2014 @ 9 weeks; Misoprostol May 15, 2014; D&C May June 3, 2014

  • I'm sorry you received such devastating news concerning your Elizabeth Rose. Her name is beautiful. Thoughts and prayers for you and your family.
    TTC since August 2013 BFP #1 1/15/14...MMC 2/24/14...D&C 3/3/14 BFP #2 5/11/14 ... severe pre-e placental abruption our angel born sleeping at 22 weeks Lilypie Angel and Memorial tickers
  • I so sorry about the devastating news

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  • dadalou said:
    I'm so sorry. You also might want to check out the book I Will Carry You by Angie Smith. She also has a blog http://angiesmithonline.com/audreys-story/about-audrey/
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    I read this book as well, and it is a great resource.  I am so sorry for what is happening to you, your family, and your baby.  I can't imagine having to anticpate what is going to happen. You will be in my thoughts and prayers. 
  • *****siggy warning

    I'm so sorry about this awful news, and for the difficult journey you have to take. I hope you can find some comfort and support here.
  • I am sorry that you were given such horrible news. My thoughts and prayers to you and your family.
    Married my rock - April 29, 2011
    BFP - June 4, 2011 EDD February 3, 2012
    Super T born @ 37 weeks - January 13, 2012
    Super T diagnosed with stage IV high risk Neuroblastoma nmyc-amp - January 2, 2013
    Super T cancer free - June 19, 2013
    Super T relapsed - January 2, 2014
    Super T earned his angel wings - January 3, 2014
    TTC for #2 beginning November 2014
    BFP #2 - Chemical Pregnancy - Confirmed May 29, 2015
    Diagnosed with PCOS; HSG - Clear; SA - Clear
    Clomid #1 - BFN
    Femera Cycle #2 - BFN
    Femera Cycle #3 - BFP 11/10/15 - EDD 07/14/16
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  • I am so sorry.  Prayers to you and your dear Elizabeth.
    November 2010 - 10.5 week loss  o:) 
    October 2011 - DS (7)  <3 
    July 2014 - Stillborn DD (24 weeks)  o:) 
    August 2015 - DD (3)  <3 
    April 2018 - 5 week loss o:) 

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