Ilja’s Story

June 24th, 2011 by Anouk Kennemo

Hi I am a Danish woman living in Copenhagen.
I lost my firstborn Ilja to NEC just a month ago. He was born in week 26 + 1 and his weight was almost 1 kg. He got sick with NEC when he was 2 days old and he had to have an operation. They removed about 7 centimeters of his small intestine. He had an temporary ileostomi that was operated back when he was about a month old. After that he thrived, had stools the “normal” way, got bigger, was able to breastfeed a little, could breath without CPAP. But when he was 2 month old and his weight was 1800 grams he got sick with NEC again and died within a couple of hours. Neither I, my husband or the NICU-staff saw it coming, his whole intestine was affected and there was nothing to do.
I miss him very much and think of him all the time.

Love Alexandra

(I am sorry if my English is not perfect)

3 responses to “Ilja’s Story”

  1. Miranda says:

    Alexandra, I know your pain. I have actually been in therapy for my daughter’s death because I miss her so very much. You and I have a very similar story with events after our babies’ births. My daughter’s story is listed as Madelynn’s story here on this website. In 4 days she will have been passed for 2 months. Therapy has really helped me in my grieving process. I am learning to accept her death and come to peace with it. I still have times where all I can do is cry and think of her and miss her. But each day it gets better.

  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. sandy says:

    we were blessed with a baby boy and a baby girl after carrying for 35 weeks. each baby ws 2 kgs when born and were very active for first 2days and were put in nicu right after birth. unfortunately baby boy developed nec nd succumbed to death in presence of so called best neonatlogist in our town. baby girk is doing fine. i request
    doctors n scientistes all over to find cure for nec soon.

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