PROM at 23 weeks, infant loss due to NEC

Hello, I am the Mom of Boone. Our precious boy was born at 23.4 weeks after my water broke at 23 weeks exactly. We still don't know why my water broke (possibly from IC). I was on hospitalized bed rest. I thought I would be in the hospital for the long run, but I ended up getting an infection and the doctors could not stop my labor. So just 4 days later I gave birth. We thought we would lose him then and there but he showed us his strength and was stabilized in the NICU. We spent 30 days in the NICU, although we had some hurdles to get over: He had a grade 4 brain bleed on the left side and hydrocephalus, and we were still trying to get him to breathe on his own. His doctors were very positive, and We thought we would bring Boone home around his due date (March 4). He turned 4 weeks old and the next day everything changed. The doctors were worried that he had an infection, as the day went on the infection got worse and he was ultimately diagnosed with NEC. He had a drain placed in his intestines, but it did not help. Boone lost his fight on Dec. 13th and I miss him every day. I am struggling with grief and guilt, I keep thinking there was something I could have done even though I know everything was out of my control. Any other mom's that have dealt with NEC or premature rupture of membranes? 

10 Replies

  • In reply to Boonesmommy:

    You can create your own blog... and name it anything you like. Click on the blog tab at the top left of the home page. Once there, on the left side of the page you can click the purple Create A New Blog button. It will prompt you through the process to create your blog. Once it's created you can pull it up via title. When you're on your new blog page you can write a new post as often as you like, by selecting the New Post tab on the right side of the page.
    I have been blogging since 2005. It's been a create source of comfort for me. I hope you find the same comfort.
    Please let me know if you have any troubles getting it set up. I look forward to reading about your journey and supporting you through it.
    Karri
  • In reply to Karri:

    Hi karri, I like the suggestion of the blog. What is the name of it?
  • In reply to Boonesmommy:

    I also had progesterone injections with Will's pregnancy and a prolonged time on bedrest. All worth it to get him here safely and to almost full-term. I truly believe the progesterone injections were a key component in carrying him to term.
    Wishing you peace in your heart. Big hugs. I can't imagine how difficult this has been for you. Know that Boone only knew love and will always feel that deep love you have for him. Many of us here at Share have chosen to create a blog to write about our journey in the NICU. I know for me I initially started writing to share my own experience and offer hope to others, but ultimately found deep, and meaningful healing from it. If this is something you'd like to do let me know if you need any help in getting that started.
    Keep taking care of yourself and know that we are here for you.
    Hugs,
    Karri
  • In reply to Karri:

    Thank you for sharing your experience. My doctor did reccomend a cerclage around 13 weeks as well as progesterone shots starting at week 16. Boone will always be our first born and we'll treasure every minute we had with him. Since he has passed my heart aches for a baby. I have hope that when the time is right I'll be able to carry our next child to term.
  • In reply to Boonesmommy:

    Hi! I did have a pregnancy after my twins. I didn't suffer from PROM again. My son Will was born at 36 weeks. We have no idea why I suffered from PROM. I wasn't dilated, wasn't contracting, nor did I have an infection. If your doc suspects that you had IC then they could possibly place a cerclage to hopefully prevent it from happening again. I would encourage you to talk with your perinatalogist before making any final decisions either way. And be sure to give yourself any amount of time you may need to heal your heart a bit. While no amount will ever take away your grief or longing for your Boone, some time may allow you to decide what the best decision is for you and your husband.
    Please let me know if I can help in any other way.
    Hugs,
    Karri
  • In reply to Karri:

    Hi kari, Thank you for your support. Can I ask if you went on to have other children after PROM? I am worried this will happen again.
  • Hi and welcome to Share. I'm so very sorry to hear of the passing of Boone. I can't imagine how difficult it is to lose your child. I did suffer from PROM and delivered my twin girls at 25 weeks gestation. I understand those feelings of guilt and loss of control over so many things in your life. Know that you're in my thoughts for peace in your heart. We are here for you in any way that you need, as we've faced the NICU and some of us have also experienced the loss of a child. I encourage you to continue to share your journey with us here. We will support you each step of the way.

    Wishing you peace. Hugs,
    Karri
  • Hello and Welcome. I am so very sorry for the loss of your son. I lost my daughter 11 years ago (in February) but it was due to Trisomy 18, not prematurity related complications. I received the diagnosis late in second trimester and I was consumed with grief and guilt. Please know we are here and you are not alone.
    Love and Hugs
    Brandi
  • I am sorry for your loss. My son did not have NEC but I do know what it is like to suffer from that guilt. As moms we are suppose to protect and care for our child. So when that is taken from us we are left feeling so empty like we failed in some way. Sending many hugs your way. Nicki
  • I'm so sorry to hear of your sweet Boone's death. Sounds like he was quite a little fighter! I haven't dealt directly with the issues that you've mentioned, but I've spent time on bedrest and had to have an emergency C-section. I know the feelings of guilt that come along with the grief of losing a child. There always seems that there has to be something that I could've done differently, but the doctors assure me that we all did everything we could. Please know that there are many families represented here who have felt those same feeling and are willing to listen any time. There are also those who have dealt specifically with NEC and are having to learn their new normal as well. Hugs to you as your go through this difficult time!

    Tracy
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