May 7th, 2016 by Katie and Nathan baby lily Louise

Hi we would like to share our story.
On the 9/11/15 our beautiful daughter lily Louise was born at 16.37 weighting 5/13. At our 20week scan we found out lily had something wrong with her heart and was monitor all way up to 39 weeks and delivered her by c section she was also breech the little monkey. It was the most amazing experience watching her be born she was just perfect. She got whisked away to nicu to start tests on her heart and she needed an operation to correct her broken heart she had quite a few issues that needed correcting so we new we would be in and out of hospital. She was going to be transferred on the 15/11/15 to have her op. Lily was the strongest on the ward and when transferred she was going to be on a Normal children’s ward we was so happy she was doing so well I thought we might get her home for Christmas. But early ours on the day of her transfer we got a call lily wasn’t very well so we got there as fast as we could and she looked really poorly her tummy was all swollen she was so pale. They told us she developed NEC I never heard of it before and they said she would need an op to remove the infected intestines. We was so scared but we new how strong she was and thought she would make it an hour later they took us in a room and told us it would be 50/50 weather she pulls through. We was not expecting to hear that my heart was broken. A few minutes later her heart just crashed and we watched them trying to bring her back they got her heart going again but it was to late she was so poorly it would have been cruel and selfish to keep her alive. They switched off her oxygen and we held her till she passed away in her daddy’s arms. I held her for hours crying why did this have to happen she was perfect how can something so cruel happen to nice people. NEC is such an aggressive infection with in hours of getting it she was gone. We had 5 amazing days with her changing nappies we even got cuddles and so did the grandparents we spent hours at her incubater just watching her sleep. Lily Louise was to good for this world I know my life won’t be the same without her I just wish there was more they could done. St Mary’s where great and did all they could and I can’t thank them enough. Good by my darling daughter mummy and daddy love you always. Xxx

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