+34
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. Charlie was born more than three months premature and weighed just 680 grams — his father Nathan remembered him as "cute but fierce"."When he was about seven weeks old he started pulling the CPAP tube off his face because he hated it that much … he was a little fighter."During those first few weeks of life in a Gold Coast hospital's neonatal intensive care unit , Charlie's birth weight doubled and his parents' optimism grew.But just as he turned eight weeks old, the family was blindsided again by a devastating diagnosis. Charlie had necrotising enterocolitis , a disease of the gut and one of the most common causes of death in the one-in-10 Australian babies born prematurely.Within days, Charlie became dangerously ill and underwent two bouts of emergency surgery, before passing away in his mother's arms." I think the anything with the word necrotising in it is scary in itself, but in your eight-week-old premature baby, it's terrifying." "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' They've teamed up with the Hudson Institute of Medical Research in Melbourne, to help raise awareness and funding for research into NEC. The researchers — led by husband-and-wife professors Marcel and Claudia Nold — are busy working on clinical trials to control the potentially lethal inflammation in babies with NEC."As a mother, I hope that my research can help other families … our ultimate goal is to save or improve the outcome of our most vulnerable little patients," Professor Claudia Nold said. " 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." "Inflammation lies at the heart of this disease, yet surprisingly, it's quite poorly understood," her husband added. As a clinical neonatologist, Professor Marcel Nold often had to explain this insidious disease to parents already under acute stress in the NICU. "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. "So getting specimens from these babies and getting meaningful information out of these tiny, tiny specimens is difficult and has only become possible in the last roughly 10 years."Their research focuses on blocking a particular cytokine — or small protein in the body — called interleukin 1, which causes the damaging inflammation. One drug already used in adults for rheumatoid arthritis has had good results in initial safety trials, paving the way for larger clinical trials involving up to 750 babies in about 10 hospitals worldwide. 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. She hoped a treatment could be available in five years, "if we're lucky, even earlier, so there is hope".Professor Claudia Nold is also investigating the microbiome of the gut to examine how NEC develops and whether culturing "the good guy in the bacteria" could help develop microbiota treatments in the future. She said she felt very grateful to parents like Sophie and Nathan Streeter, for championing the research and helping develop "Even if it's just providing information and support, we want to make sure Charlie's life could make a difference," Nathan said. "How have we not cured NEC yet? We feel a need to do whatever we can, so that in 20, 30 or 50 years from now, NEC will be a thing of the past."While still carrying their grief and love for Charlie, the Streeter family is now looking forward to welcoming his little sister into the world."So Charlie's making sure everything goes well."It's known as the 'Hobart method' — and it's been adopted worldwide to help premature babies like EvaInternational game of intrigue as Russia-India oil trade escalates 'Seeking political advantage out of this terrible conflict': Australian government hits back at UN vote criticism'Our hearts are broken': Mother pays tribute to daughter after remains found at Kakadu'Stooping' is soaring in popularity in China. Why old people hate it but young people are embracing it'A pair of clothes, my phone and my three dogs': Queenslanders flee fires with next to nothingMatthew Perry's five iconic moments as Chandler Bing on Friends 'It's pretty dire.' The cost of living crisis is still hitting Australians hard. How did we get here — and how do we get out?
Grieving Couple NEC Research Awareness Support Clinical Trials Treatment
Australia Latest News, Australia Headlines
Similar News: You can also read news stories similar to this one that we have collected from other news sources.
Young couple splashes $2,225,000 on home with colour scheme they didn’t likeThe auction winners loved the California bungalow’s Malvern East location and its size, but just plan to give it a coat of paint.
Read more »
Young couple pays $3,415,000 for one-of-a-kind home in old butcher’s shopThe striking architect-designed Newtown residence with pool, private courtyard and distinctive timber kitchen attracted four bidders at a hot auction.
Read more »
Israel Hamas: Spiderweb of Gaza tunnels raises risks in ground offensiveFighting in densely populated urban areas and moving underground could strip the Israeli military of some of its technological advantages.
Read more »
Married couple from North Queensland presumed dead in light plane crash at Finch Hatton, west of MackayA man and a woman in their 70s were on board the aircraft when it went down in mountainous terrain in the Pioneer Valley west of Mackay.
Read more »
Plane crash kills married coupleAn elderly couple are suspected to have been killed in an “unsurvivable ” light plane crash in north Queensland.
Read more »
Couple targeted in early morning shooting on Melbourne streetA young couple is lucky to be alive after surviving a hail of bullets at Keilor Lodge in Melbourne&x27;s north-west.
Read more »