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.
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.
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.
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.
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).
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))
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 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
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.
Re: 24 weeks...
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)
We love and miss you Timothy
BFP #5 April 6, 2014; missed m/c May 15, 2014 @ 9 weeks; Misoprostol May 15, 2014; D&C May June 3, 2014
My Blog
BFP# 1 7/7/12 Beautiful DD born still at 36 weeks 5 days on 3/2/13
Diagnosed with PCOS in 2005. Started Metformin July 2013
Please be our rainbow!!
**All AL Welcome**
October 2011 - DS (7)
July 2014 - Stillborn DD (24 weeks)
August 2015 - DD (3)
April 2018 - 5 week loss