Grieving Couple Raises Awareness for NEC Research

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Grieving Couple,NEC,Research

A couple who lost their newborn son to necrotising enterocolitis (NEC) are working to build awareness and support for research into the devastating condition. Clinical trials for a potential treatment are planned.

A grieving couple who lost their newborn son to necrotising enterocolitis are working to build awareness and support for research into the devastating condition.Researchers are working to develop treatments for the inflammation behind the gut disease, with clinical trials planned for a drug currently used to treat rheumatoid arthritis."He was a beautiful little boy, he was the nurses' favourite … he loved his cuddles," she said.

"We always try and remember to be brave like Charlie because he fought so hard and tried to be there with us, but unfortunately he couldn't make it in the end."Here was this disease that we'd never heard of, that came out of nowhere, and there wasn't a lot that anyone could do about it."Devastating illness still 'quite poorly understood'

" the gut is inflamed first, and then it dies off. And when it dies off it requires surgery, and those babies that do require surgery, up to 50 per cent of them unfortunately pass away." "Because NEC is so unpredictable, we are often in a bind as to what to say to the parents and how to describe the risk properly, because often we just don't know what the next day will bring," he said."Our smallest babies are about the size of a can of Coke, and about the same weight," Professor Marcel Nold said.

Professor Claudia Nold said the research process could now be supercharged thanks to "machine learning and AI doing a deep analysis" of all the clinical data. "Even if it's just providing information and support, we want to make sure Charlie's life could make a difference," Nathan said.

Grieving Couple NEC Research Awareness Support Clinical Trials Treatment

 

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