Madelynn’s Story

June 24th, 2011 by Miranda, age 35

My baby girl, Madelynn, was born on April 1, 2011. She was 10 weeks and 3 days early, weighing 2 lbs 10 oz. I had severe pre-eclampsia and had been hospitalized for 8 days before the BP medication stopped working and I had to be delivered. Madelynn developed an isolated perforation on April 4th and had emergency gut surgery. During that surgery they really thought they would find NEC but did not. She had a tiny hole in her stomach, most likely from her feeding tube or the CPAP machine or a combination of them both. The surgeons during that surgery took everything out and examined her entire gut. She was perfectly fine. Within a week she had a contrast die study done that showed her stomach was healed and feedings then started that afternoon. Breast milk only… I pumped religiously to make sure there was always plenty in supply at the NICU. I still have 1/2 of a gallon in my freezer at home.

After about 3 days of feedings she was still not having bowel movements so they decided to give her a barrium enema. During the procedure they said everything still looked great. That was April 18th. That afternoon she had several bowel movements. I had never been so happy. I was one of the mothers that was at the NICU as often as possible. Most days from 8 to 11 hours and every single day. We did kangaroo care and also began breast feeding practice on April 21st. Madelynn was gaining weight and doing great. Every day was weight increases, bowel movements every 3 hours, tolerating feedings and off and on with her breast feeding attempts. Always 10 minutes at least but she was just a sweet and silly baby. Most of the time I just don’t think she was hungry and just wanted to visit and look at me while I talked to her.

On May 9th and 10th, her blood count was up and down. They were doing lab work ups regularly and her body was just not reproducing enough blood. On May 11th afternoon she was given a small blood transfusion. The purpose was to give her a little extra energy and get her lab work looking better. She had also been having small spells of apnea which she was recovering on her own and they thought the transfusion would help with that as well.

At 3AM on May 12th, at 4 lbs 3 oz, she was diagnosed with NEC. Her gestational age with 35 weeks and 3 days. Her age was 5 weeks and 6 days old. I woke up for no reason at home in a panic. I called and the NICU nurse practioner said they had just ordered xrays.

At 12AM every night Madelynn would have a time where she was wide awake and that night was no exception. The nurses would talk with her and play with her. There was absolutely no symptoms. She had just had a regular bowel movement at 12:30 or so and fine.

At 4:30 I reached the NICU and her belly was so extended and her skin color was turning a greenish color. Antiobiotics were being given through an IV. They had to order blood for her for surgery. Surgery began at 11AM. At 1:30PM, my husband and I were told that there was nothing they could do for her. NEC had taken my daughter’s gut in minutes that early morning. At 4:11 PM she died.

This is a terrible disease. I spent every day from April 5th (when I was released after my c-section) to May 12th with my daughter and I never heard NEC or Necrotizing Entercolitis once. Madelynn healed 3 heart murmurs in her almost 6 weeks of life and I knew every single thing about them. But not once was I told that this could happen. I would have been looking for signs.

12 responses to “Madelynn’s Story”

  1. tasha says:

    my son too had deveopled nec and do not blame your self for not looking for signs of nec bc you did not no of it.. the nurses in the nicu are always checking for nec by looking for blood in the babys poop and always checking there belly girth. i had found out about nec from one of the moms in the nicu so i had started asking questions about nec to the nurses. so they told me not to worry but after i just wouldnt give up on asking questions they told me all the signs to look for, so i did i was alwasy feeling to see if my sons belly was hard and always looking at his xrays for a hole in his bowel, i was alwasy looking for the signs but out of no were my son develped nec. his was so server that with in a half hour he went from being so heathly to dieing.. so please do not feel guilty bc even if you had looked for signs , sometimes nec comes so quick and so fast you dont even see the signs until its too late. my son died almost three months ago and three months old, he would have been six months old today.

  2. Anouk Alexandra Kennemo says:

    Hi Miranda. I am so sorry for your loss. And yes our stories do sound very much the same – when Ilja had NEC the second time around he was also 35 weeks old. Later the pediatrician told me that they often see that the older the child is the worse the NEC-infection becomes. I hate the thought that other families and (mainly) premature babies have to go trough the same as we and our babies did. Hopefully they soon find a way of preventing and curing NEC.
    I lost my son the 20th February this year. I still miss him very much. I also had therapy witch has been a good thing. Right now I am so fortunate to be 16 weeks pregnant which has lifted my spirits.

  3. Miranda says:

    Hi Anouk,

    Thanks for your response. I daily think of all the things that went wrong in the last few days of Madelynn’s life… one day she dropped 2 oz of weight but went right back to gaining, she got very sleepy but would still tolerate feedings (just not as alert), she was given formula (when there was breast milk in the freezer at the NICU) and she was having apnea spells that were more frequent over the last 3 days of her life. But she was also slightly anemic. So the symptoms were misread as due to anemia because of her age. Nothing can bring her back so I’m now trying to accept what has happened.

    My husband and I are also considering getting pregnant this winter.
    I’m still in therapy.

  4. Barb says:

    Hi Miranda,

    I responded back to your response to me.
    Thank you.

    I have the same feelings as you about the information given to us.
    I never knew what NEC was. Even in the beginning of things going a bit funny, the doctor only said that they’re looking out for any stomach infections. No real information.
    I also wish I understood so I could be more informed at the time however, the nurses & doctors know the risks and are looking for signs of it. I know the doctors were looking for signs so there is nothing I can say bad about the staff.
    It’s truly devastating. I am wishing both of you the best in your pregnancies.
    I hope to try early next year too and I hope I can carry to full term & bring a healthy baby home with us. That’s the best that we can hope for. We can’t bring our little girl back either.
    We’re starting therapy next week.

  5. Miranda says:

    Elaine,

    Thank you for posting Madelynn’s pictures. It really means a lot!

    Things are going well for me and my family. Slowly we are progressing and every day reminding myself how I will honor Madelynn’s memory and life.

  6. Elaine says:

    Miranda, it makes me happy to see Madelynn on the site with her story…I feel that when I see Caitlyn with me on the site it makes me feel that I feel her close…

  7. Miranda says:

    I wanted to give an update on how I’m doing now that it is about 1 year since our severe preeclampsia journey started. Today I am 10 weeks and 1 day pregnant with our rainbow baby. Madelynn will be a big sister in October this year. I pray that everything goes well for this pregnancy and the preeclampsia stays far away.

    On April 1st will be Madelynn’s birthday. This is a day I have been dreading but I have really ramped up on my therapy the past few weeks to get myself more prepared. I am also taking off work to allow myself to grieve and do what is necessary for continued healing during that time.

    My therapist strongly thinks I have been suffering from post traumatic stress disorder since the death of Madelynn and I am coming out of it. I now reflect on more of the good times with her than the bad/scary ones.

    For anyone reading this and has lost your baby to this terrible disease, one hour at a time until you can phathom one day at a time and eventually you will get to one week and one month at time. Recovery is a process, let yourself be in it and grieve for your baby.

    ~Miranda

  8. Elaine says:

    Miranda, one year, what else can I say? I find anniversaries tough as the minutes play back to actual events. You will make it through the day. Just as you said, it’s a process, it’s a journey. Not easy, and time that won’t heal….just time that helps us somehow make it a part of us. A different way of living. Miranda, rainbow baby will help…it’s just all different. Email me and we can talk. I am here for you. Caitlyn should have been turning 6 years old April 5th….

  9. Miranda says:

    I just wanted to post a quick update if anyone is reading. I am 34 weeks and 1 day pregnanty with Madelynn’s little sister. Her name is Faith Olivia. There has been no pre-eclampsia so far with this pregnancy and Faith weighs about 6 pounds so far. She is going to be a big girl.

    I still think of Madelynn every day and miss her terribly.

    Love,
    Miranda

  10. Natasha says:

    Awee so glad to hear that

  11. Elaine says:

    Miranda, this is wonderful news, both Faith and 34 days seems like the stars are aligned. I know this is no easy journey, and the days tough when you think of Madelynn. Email me at contact@babieswithnec.com if you want to talk. I know your mind is up and down and if you need me I am here. So happy for you.

  12. Miranda says:

    Elaine,

    Just thought I would give an update on how all is going… Faith will be turning 2 years old on October 1st. It has really been a fun 2 years. And I am quite over protective of her but oh well. I still think of Madelynn every day but I think of the good moments and remember how she smelled and how soft her skin was. I still take care of her by making sure her gravesite stays beautiful. This has been quite a journey. Thank you for having this website. It really helps to be able to share stories with others that have been through something so similar.

    Much love,
    Miranda

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