A boy with an extremely rare genetic condition has sadly died following surgery.
Benjamin Edmundson-Brown defied the odds numerous times throughout his life after being born 10 weeks premature, weighing only 3lbs. He fought for his life on more than one occasion after being admitted to hospital due to infections.
But on January 30, 2023, the much-loved 15-year-old, from Easington Village, County Durham, tragically passed away at Great North Children's Hospital at Newcastle's Royal Victoria Infirmary (RVI) just weeks after undergoing surgery on his spine. An inquest into his death on Tuesday concluded that surgery was the cause of his death.
Coroner Paul Dunn said: "Often coroners say the natural occurring condition is most relevant and surgery has contributed to it. This is, I'm afraid, the other way round.
"That's not to say that the surgery itself was unsuccessful, it was clearly a successful surgical procedure carried out by a very experienced team... but the impact that has had on Benjamin, perhaps with his conditions that he was suffering from, or perhaps as a result of the fact that his body just did not want to cope with surgery like that.
"Today we've heard that surprisingly the wound itself didn't seem to be really healing. That's kind of the body's way of saying 'I'm not having this' and the reaction to that has eventually led to his death."
Benjamin was born on March 15, 2007 in Teesside and was noted to have a delayed development from a young age. Investigations into his condition later determined that Benjamin was living with the extremely rare genetic condition, NGLY1.
The condition causes severe learning disabilities, development delay, epilepsy and progressive scoliosis, which causes the spine to twist and curve to the side. In December 2022, the teenager underwent surgery to straighten his spine, which at the time had a curve in excess of 100 degrees and would have affected his quality of life.
Dr David Fender, a consultant orthopaedic spinal surgeon at Newcastle Hospitals Trust, told the inquest that the surgery appeared to go well. However, during his recovery period it became apparent that Benjamin's wound wasn't healing as expected.
On two occasions during the course of three weeks, Benjamin underwent a debridement - the removal of damaged tissue or foreign objects from a wound. Following the second debridement Benjamin appeared peri arrest - the period either just before or just after a full cardiac arrest.
CPR was administered but it was later noted that his interactions had reduced. He then suffered a second cardiac arrest and it was agreed that Benjamin should be palliated. He passed away with his parents, Victoria Edmundson-Brown and Peter Kelly, by his bedside on the evening of January 30.
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