I have lost my 3 days old baby and I don't know how to live anymore

My baby Ellen was born on March 14th, 2018 at 7:41 pm at 27 weeks and 4 days gestation. My pregnancy seemed to go well, no health issues except I had bleeding twice at 15 weeks and 19 weeks and both times my OBGYN and ER doctors could not determine the cause. The day my daughter was born I have seen my OBGYN for my regular appointment and I already had some abdominal pain which I've mentioned him about. His response was no worries, it is just your uterus that is expanding that was 10 am. At 4 pm I made it to the hospital with contractions and 4 cm dilated. They have put me on IV and gave me a steroid shot for baby's lungs. Not sure why they did not try to stop the contractions, but they induced me and my daughter was born at 7:41 PM after pushing for 8 times. She was born 2lb 6oz and 15in long. There was no NICU doctor when she was born just nurse practitioners, baby's NICU nurse, and RT. After she was born we didn't see her for a few hours, then the nurse practitioner came and told us we can do and see her. She said she is doing well, she doesn't have any heart issues, her blood pressure is normal and her breathing is fine. We were kind of relieved. 2 days while she was at NICU everything seemed to be fine, and doctor and nurses were telling us that her body is responding well on all the meds and her breathing seemed to be getting better day by day. On 3/17/2018 when we visited her at NICU doctor said he had to talk to us and my heart dropped. He told us that she had grade 4 brain bleed and 3/4 of her brain was in the blood, she had anemia, and she also had a heart problem. He told us if we want to continue her care or take her off life support. I am trying to understand how can everything go well and suddenly everything is wrong. They didn't give us any hope, they have told us even if makes it out of the blood transfusion, she will not talk, walk and will have all kinds of disabilities. We made the most difficult decision and took her off life support and she passed away peacefully on 3/18/2018 at 1:37 am. I am afraid we made a horrible decision, I feel like we didn't give her a chance to fight for her life. I buried my child yesterday and I don't know how am I going to live my life again.

6 Replies

  • I am sorry for your loss. Having to make the decision to take your child off of life support is so hard. I had to make the same decision 6 years ago with my baby. Just take it one day at time and if needed an hour at a time. Many hugs. Nicki
  • Thank you for sharing your story. I'm so sorry for the loss of your precious baby Ellen. This is one of the most painful, traumatic experiences anyone can undergo, and my heart goes out to you. I understand why you would feel tormented by all the "What Ifs," but it sounds like you and the doctors and nurses did everything they could for Ellen. There are so many things about neonatal care that we can't control and we may never understand, but I know that you were the best mother anyone could've been to Ellen. Please know that you're not alone and we're here to support you on your journey. I'll be thinking of you and wishing you peace and recovery as you continue to keep Ellen in your heart.
    Hugs,
    Deanna
  • Hello and welcome. I am so very sorry for the loss of your daughter. I lost my first daughter 11 years ago, due to Trisomy 18. I also made the decision for my daughter to be DNR so that she would not endure any pain and her life could be free of suffering, even if it was short. Its one of the hardest decisions and its not one that any parent should have to make. We have a saying here, that after you lose a child "one day at a time" is way too much to think about, so we take it "one breath" at a time. Just keep taking breaths. You wanted only the best for your daughter and you did what your instincts told you was the best, which is all that any parent can do. Please know we are here for you and this is a safe space.
    Love and Hugs
    Brandi
  • I am so sorry for your loss. I too had to take my son off of life support and it was the most difficult decision I ever had to make. Take it one day at a time and if that is too much take it at an hour at time. In those first few weeks I was living it a minute at a time. Know that we are here for you and sending many hugs. nicki
  • In reply to TrinitysMommy:

    Thanks Samantha,
    It's really really hurts just to think what angel moms are going through. I don't think this pain will ever ease.
  • Welcome to Share. I am so sorry for the loss of your sweet baby girl. I lost my daughter a little over 11 years ago. I too had to make some tough decisions regarding her life. Even 11 years later when I let my emotions take over I question every decision I made. Deep down I know we made the right calls. Try not to be to hard on yourself. Know that every decision you made you did out if love. Deep undeniable love. Remember grief is not a measure of weakness but a depth of your love. Your love for her.
    Starting a blog on SHARE helped me. I have found so much love, comfort, and support here. Please know you are not alone. We are here for you.
    So much love and many hugs,
    Samantha
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