Thomas and Matthew’s story

July 8th, 2009 by Julie

Hi all, I can’t believe how common this so called rare disease is.

I had my twin boys on the 26th Oct 04 born at 25wks Thomas weighed 1lb 9oz and Matthew weighed 1lb 11oz sadly we lost matthew at 2 days old due to his prematurity he was just to small. Thomas seemed to do well that is until the 8th of Dec he was unwell not tolerating feeds distended tummy (he was in the same nicu bed where we lost Matthew) gradually over the next few days he went downhill his kidneys went into failure and we were told to prepare for the worst. He was transferred out to a specialist unit we followed and when we got there a dr came to see us and told us the chances of survival were very low.The next day when i went to see Thomas he looked awful ill never forget that day he was grey and had 2 cannulas in his head i thought id lost him then.Well they kept him on antibiotics and after 3wks decided that the only way forward was to operate at last!! after the op he perked up and after 3wks we were sent back to our local hospital but less than a month later he was transferred again,he had developed NEC AGAIN!!! This time was not so bad and after a month we were sent back and 6wks later i bought Thomas home aged 6mths He had actually had NEC 4 times but my little fighter never gave up thankfully. Hes now a beautiful 4yr old with problems feeding-due to not feeding because of the NEC-and possible cerebral palsy -due to a bleed the night we lost Matthew- but i cant thank the hospital enough for saving my little boy I didnt realise just how bad NEC was until after and i read about what a horrible infection this is and how lucky we had been for Thomas to survive 4 bouts of it I think more awareness should be made about NEC as its such a nasty thing to happen and so quick.

Thanks for reading our story

One response to “Thomas and Matthew’s story”

  1. Kristen says:

    i agree its so rare but common at the same time!

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