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Meet the Families affected by Surgical NEC 

"1 in 4 babies diagnosed with NEC will require surgery, 3 in 5 babies that has surgery for NEC will require an additional surgery"


Charlie's Story

Charlie and his Twin brother were born at 36+6wks (Term Baby) at just five weeks old Charlie developed Necrotising Enterocolitis. Charles has had multiple operations and now lives life with Short Bowel Syndrome & TPN Dependent Read More...

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Maia's Story

Maia was born at 35 weeks, by day 3 something just didn't seem right and I was in the hospital room when my husband phoned me to come back to the special care unit urgently . This is when I first heard the word NEC . I was told my baby was to be transferred urgently to the sick kids where her case would be reviewed. Read More...

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Sam's Story

​Hi This is Sam, Sam was doing great, we was waiting for a bed at our local hospital. We left him at 2 by 3:30 we had a phone call to say he was unwell. We went back to the NNU and was greeted with Sam has NEC again, he'd already had it once and had managed to be treated with antibiotics this time he was ill so much quicker. Read More... 

Samuel's Story

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My little boy Samuel was born suddenly at 23 weeks and weighed 1lb 4oz.

He seemed to be doing really well for the first 2 days and then he had a bleed on the brain and his lung collapsed at the same time. He recovered from it quite quickly however we were told he had a PDA which would 1st be treated with medication (which didn't work). At just under 2 weeks old and weighing 1lb 6oz Samuels tummy turned blue and he got rushed to another hospital for urgent surgery. Read More...

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Gemma's Story

Hi I'm Sam, one of the admin on the NEC UK Facebook page. My daughter was born at 28 weeks in 2010 weighing 650g. She got NEC at 6 weeks and needed surgery. Read More...

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Lolly's Story

My twins were born by emergency C section at 27 weeks on 14th July 2002. Jessica became an angel 30 minutes after delivery due to undiagnosed Twin to Twin Transfusion Syndrome . Jessica was 3lb 11oz and Lolly my survivor was 1lb 9oz . five days later Lolly developed NEC. Read More...

Thomas's Story

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Our son Thomas was delivered at 26 weeks by Caesarean, weighing 1lb12oz. Mum Louise had pre-eclampsia & was very sick. For a while both where in intensive care. After a couple of days I had a call from NICU to say that Thomas had taken a big turn for the worse. He was a horrible colour & was on a cocktail of antibiotics. Read More...

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Bobby's Story

Bobby was born at 25 + 5 gestation weighing 1lb 10! At 5 weeks old bobby was diagnosed with confirmed NEC it was really touch and go and I really did think that we would lose him however through the amazing neonatal team Bobby fought and kept fighting. Read More...

Freddie's Story

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Freddie was born at 29 weeks by emergency c section due to me developing chorioamnionitis. He initially did remarkably well Day 10 something wasn’t right on day 14 he was diagnosed with severe necrotising enterocolitis.


Niamh's Story

Niamh was born full term on 26th November 2016, she was healthy and thriving and a very content little baby girl.

On 26th December 2016 at one month old Niamh began bleeding and having loose bowel motions at that point there were no other symptoms. We brought her to the local emergency department at the Royal Belfast Hospital for Sick Children she was assessed and they sent her home assuming she had a milk allergy, however a few hours later Niamh became very unwell and was rushed back to the emergency department where she was diagnosed with having sepsis caused by Necrotising Enterocolitis.

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