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Adult survivors

Meet the Adult Survivors of


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Annemarie's Story

I am a 28 year old NEC survivor who is currently recovering from my most recent operation. I wanted to share my story to highlight awareness of adults who can sometimes have ongoing issues or complications as a result of having NEC as a baby.I was born 9 weeks premature. I had 50% of my small bowel and 1/4 of my large bowel removed because of NEC. Read More...

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Nicola & Freddie's


Hi I am Nicola and I am a NEC survivor. I had NEC as a new born back in 1980, I was born at 29 weeks and I was very lucky to survive then as I had perforated in 3 places before they operated and then I had reversal at 13 months but I was in hospital for a whole year back then! Due to the extent of my original surgery the scar tissue left me infertile and it took 3 rounds of IVF but in 2015 I had identical twins. Sonny and Freddie. They were born at 28 weeks, Sonny weighed 960g and Freddie weighed 630g. At 6 weeks my Freddie caught NEC Read More...

Paul's Story

Born 1970, weighing 7lb 5oz my weight then dropped to 2lb 2oz. Weight now 11 stone. The last of 4 babies for my mum, full term. I was born in Burnley general then transferred to Pendlebury children's hospital which has now closed.​ I was originally born with rhesus incompatibility and required 2 blood transfusions and a blood exchange. Soon after I developed (what I know now after checking my doctors records last year) NEC. Read More...

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Michaela's Story

My mother gave birth to me via C section, due to the fact I stopped growing and she had a kidney transplant just over a year before giving birth. I weighed 3lbs 3, and developed NEC. Read More...

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