Baby Mia’s Story

August 11th, 2012 by Jackie

LONG STORY:
Hi everyone..I’m new to the group. On November 18 2010 I gave birth to our first born, our beautiful precious Mia at 29 weeks & 3 days due to severe preeclampsia that I truly believe the ob gyn neglected my care. I was a first time mother and when I felt swollen and weird he told me i was fine & i was being paranoid. He was so highly recommended that I trusted him. I had no idea what preeclampsia even was at the time. More or less at the hospital my blood pressure was jumping but I remember the nurse telling me that it stabilized. Then some other doctor on my ob gyn team said my baby was dying and they have to take her out immediately…i went into panic & didn’t think to argue. Mia thrived and was doing so well for almost a month. My husband & i were in the NICU everyday and they were preparing us for taking her home since she was breathing on her own and doing very well. A week before Mia developed NEC she started to have increased Apnea & bradycardia episodes..I questioned the NICU..they told me this was normal & common. During one of the mornings that I was there I thought Mia was lethargic and something seemed off. The drs reassured me that she was fine. That evening they found blood in her stool and again the Dr said not to worry (I didn’t know anything much about NEC at the time even though i read about it & when I asked the drs they told me i don’t have to worry about it). Within 24 hrs Mia had swollen up, all black & blues, distended stomach, spitting up a cup full of green bile…when i saw her like this I was in shock, started to cry & almost fainted. My precious baby was laying there helpless & appeared to be in shock. I asked the dr why her eyes looked liked they were bleeding & he was scared to answer me. He said im sorry i was just notified at 7 am…the surgeon came in and did a penrose drain. I remember sitting in the other room waiting for the surgery to be complete because they weren’t allowing anyone in and I was pumping more milk for Mia because I had to think positive & be strong for Mia & all of a sudden I saw a nurse running with a mop towards Mia’s room. I threw the breast pumps and ran after her & yelled to my mom that Mia is bleeding to death…they didn’t let me in. Everything happened so quickly and her blood pressure started to go down. Drs were doing chest compressions on her. All of a sudden the drs put 3 chairs around Mia’s incubator for me, my husband, & my mom…wrapped her up in a blanket, unhooked some wires, placed her in my arms & said I’m sorry. She passed in my arms from a cardiopulmonary arrest according to the death certificate. Everything happened so quick that all I knew was to tell Mia how much I love her as I held her in my arms & she closed her eyes. My soul died at that exact moment & im never the same. I never heard my mom cry as loud as she was crying at that moment..my husband who doesnt express his feelings just put his face in his arms and cried like a baby. I looked around the room and saw the drs. & nurses crying. Mia was so feisty, so beautiful, so strong…the drs told us she was doing the best out of her unit and that she would go to a step down unit 2 days before how could this happen?!! It was so hard to get her medical records from the hospital but when I did i studied page by page, contacted other drs…we were told that there was medical malpractice. Mia was showing signs of feeding intolerance a week before which they never told us. This is when she had increased A’s & B’s but they still increased her feeds. That time when blood was found in her stool they should’ve been pumping out her tummy and consulting with a surgeon instead of waiting the next day. We also found out that Mia was fed her own aspirates-is this normal? The X-rays confirmed free air in bowels way before why did they wait so long to interact & not telling us?!! Mia’s bowels perforated & ruptured..she had DIC (disseminated intravascular coagulation-bleeding thru out her whole body) causing her to go septic. The surgeon noted in his findings that Mia had ascites & abscess in her bowels but he wasn’t sure that it was NEC. I don’t know if i’m being naive but why did they unhook her from the wires & place her in my arms & said I am sorry-maybe she would’ve turned around like so many success stories that I heard. To top that off, in the medical records it said the nurse fed her formula right before or around the time they found blood in her stool….I was giving her my breast milk exclusively. I found all of this out only in Mia’s medical records. I was there everyday & when I asked the nurses to see Mia’s charts they replied to me that I’m there the most of any NICU moms & i know everything on a daily basis. I tried to be nice because the precious life of my daughter was in their hands. We brought them cookies & cakes every week. Were proceeding with a lawsuit not to get any financial gain because Mia is priceless & no $$$$$ will ever heal my broken heart but I want to expose these  Drs so it doesn’t happen to any other family. I blame myself everyday…I lost trust in drs/nurses. I wish I would’ve threatened them, yelled at them, etc. & maybe Mia would be alive today…it kills me that Mia went thru so much pain and I her mommy didn’t protect her & save her. I thought Drs/nurses including my ob gyn were knowledgeable & I trusted them and by doing this my daughter suffered and died. I miss her & love her more than words can express.
♥RIP my beautiful angel Mia 11/18/10 11:29 pm-12/14/10 2:48 pm

If love could save you, you would live forever. I wish it was me who died & you would’ve lived my precious baby

6 responses to “Baby Mia’s Story”

  1. yvonne says:

    Jackie, when my daughter was 3 days old, she began to throw up- it was yellowish-green, I was young and a new mother, but I just knew that something wasnt right- I asked the nurse and she told me it was normal that she was a preemie and sometimes preemies have a hard time keeping down their feedings, a feeding tube was placed in her- the next morning I went to see her and she looked swollen- she wouldnt even hold my finger- there was a doctor in the NICU making his rounds and I asked the nurse to call him over, she just didnt seem right, the nurse told me that I needed to leave the NICU while the doctor was in there- I refused – he finally came over and looked at her- asked the nurse when her last bowel movement was and how her feedings were going, he then ordered x-rays, he showed me and my husband the x-rays and pointed out what he called “dead tissue”- he ordered all feedings stopped and she was transferred to a childrens hospital – the next day her intestine perforated and she had 75% removed– I have always wondered if they stopped her feedings and checked her when she first started throwing up bile if she would have been okay- I’ve also wondered if the feeding tube forced food into her intestine that were not working and that caused the peforation– fortunately, my daughter made it through the surgery and a second one to reconnect what was left of her intestine and is now 22 years old– I am so sorry to read your story, but it sounds so much like what happened to me, only the doctor that checked on my daughter did the right thing– Love and prayers to you and your family

  2. Miranda says:

    Hi Mia’s Mom,

    I haven’t been on Babies with NEC in a few months but this morning I am…. I just read your story and I just want to tell you that you and your husband are not alone. See my baby’s story under Madelynn’s story from June 2011. Reading Mia’s story brought back all of the feelings I had when Madelynn first died… including the formula being feed to her when she was on exclusive breastmilk. I do however feel that Madelynn did get the best care possible (other than the incident with the formula) and I’ve had to time to really digest everything that happened during that time. NEC is a HORRIBLE disease and yes, some babies do survive it but some babies get so sick so quickly that there is really nothing that can be done. It took me a long time to be able to say that. I went to cognitive therapy for my baby’s death and my feeling toward Madelynn being ripped from my body due to pre-eclampsia and c-section. I started therapy 2 weeks after her death and I was diagnosed with PTSD (post traumatic stress disorder). I was like you, in the NICU EVERY day… I knew everything about Madelynn’s care and nothing prepared me for what we went through the day of her death, which was also just a few days from taking her home.

    Please don’t hesitate to reply if there is anything I can do to help you.

    Much love,
    Miranda (Madelynn’s mom)

  3. Jackie says:

    Thank you Yvonne & Miranda for reading my story. Yvonne you are very lucky to have your baby alive and Im so proud of you stuck to your ground and listened to your intuition. Miranda Im so sorry about Madelynn…I hope her & Mia are playing together in heaven. Its been nearly 2 years, but the pain is still so raw…it feels like I just lost Mia yesterday. I know the pain of losing her will never go away and nor do i expect it to. I now have another daughter named Milania who im crazy about & love dearly but, i still and always will miss and yearn for my baby Mia. I just have to make sure that Milania and any other future babies I have will know about their precious sister Mia but will feel just as loved & wanted because it is not their fault that Mia passed. I think about this often and im definitely a changed person since Mia passed….a big part of my soul has died and my heart is forever broken. I had a tremendous heart and was definitely one happy optimistic girl that used to always help and make everyone smile…so whatever is left of me i make sure my other babies have. I just wish Mia was still alive and i blame myself everyday (no therapy helps me) for Mia’s death….I shouldve yelled, shouldve pushed the nurses and/or Drs. when something didnt feel right instead of allowing them to make me think i was being paranoid….if I wouldve Mia wouldve been alive. Also, I shouldve slept in the NICU not going home until I would come home with Mia…I shouldve told Mia more often how much i loved her and prayed for more often…I shouldve made sure they didnt give her that blood transfusion because research shows a correlation between NEC & blood transfusion. Oh the million I should haves!!! Losing Mia is such a heavy burden to live with and the guilt just kills me everyday I cry for her. God shouldve taken me and let Mia live… I wish I could just turn back the hands of time!! I would give anything in this world to just hold Mia again in my arms <3

  4. Lakeisha Sparks says:

    Hi Jackie I just read your story and first I would like to send my condolences to you and your family for your baby’s death. I too lost my son Sir to NEC in 2008, and I also felt it was the doctors fault because I too had him on breast milk, and they also gave him a blood transfusion. It’s crazy because when he was first born he was ok, nothing was wrong, he did fine all the way up to the time they start feeding him formula and giving him blood transfusion, this is a pain that never goes away, the reason I’m writing you because I wanted to know how your lawsuit was coming along, I’m too looking for a lawyer to file a lawsuit and I don’t know what to do, thank you and keep prayer and God first

  5. Shannon says:

    Hello Jackie, I just read your story and I am so very sorry to hear of your loss. I recently lost my little girl to nec as well. I am greatly struggling with grieving for her because I too feel that the doctors did not do all that they could to save my baby Malorie. I am so angry and full of pain! I too told the doctors one morning that she looks different, her color was not the same. They had told me she was fine. She passed away 12 hours later. Our mama instincts are so strong, we know when there is something wrong with our babies. I felt like no one listened to me and she just sat there in her incubater until it got so bad that they had to do something, then it was too late. I was wondering how your lawsuit is going? Has anything come from it? My husband and I are looking at also filing a malpractice lawsuit against the hospital. If you could give me any information about this I would greatly appreciate it. Our babies are priceless and this should not have to happen to other families! Thank you, Shannon

  6. Ed says:

    Jackie,
    If you are still following this thread, I hope that you have been able to realize that what happened was in no way your fault. I lost twins to NEC about 18 months ago. I hope you are able to hold the doctors and nurses accountable.

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