The family of a nine-year-old boy are heartbroken after he died following an operation that carried only a “one per cent chance of death”.
Noah Dixey, was diagnosed with an incurable genetic disease called Alagille syndrome when he was just eight weeks old. The illness only affects around one in every 100,000 children.
Noah therefore spent most of short life in and out of hospital and was taken into Great Ormand Street Hospital in London for a 14 hour long operation to attach his kidney to another source of blood and remove a metal stent that had been inserted in a previous operation, but was causing a blockage.
However, the operation was not successful and even though Noah appeared to improve at first, he died three days later on October 26 last year – just one day after his ninth birthday.
Speaking after an inquest into his death, Noah’s devastated parents Gemma and Scott, from Leicester, paid tribute to their son, saying: “He was an amazing, brave boy, he was the best. He didn’t let his condition get him down. He was in a mainstream school as well.
“He was a homeboy, he loved being at home, playing on his iPad and watching YouTube videos. He had one brother, Fin and a sister, Maisie – and his best friend was his dog Mabel.”
The couple informed their loved ones of Noah’s passing one day after his death, report Leicestershire Live. They said: “After nine beautiful years with our amazing son Noah Jude, he decided last night at 10.30pm, he was tired and has gone to sleep for the last time.
“We are utterly devastated. We’ve watched over this beautiful soul and have seen how someone so beautiful and kind has been so brave and strong. He fought so hard but his little body was too tired. Rest in peace you sweet, sweet boy. Mummy and Daddy will love you always. We were not ready to let you go.
“Noah Jude Dixey, it was a pleasure to be your Mummy and Daddy. I wish I could have saved you but you were too tired. You fought so, so hard for nine years, and even more so in the last three days. It’s not “goodbye”, it’s “see you soon”.
Noah condition mainly affected his liver, but he also suffered from heart complications, narrowing blood vessels, and brain aneurism and had previously lost his right kidney. An inquest into Noah’s death was told his family were told the operation carried a “one per cent chance of death”.
But when doctors realised his condition was worse than they originally thought when they started operating. Dr Colin Forman, a transplant and vascular surgeon at Great Ormond Street Hospital, said the operation had been successful on around 20 other previous patients, but in Noah’s case, his stent added to made the procedure more complex. It had been in his abdomen since 2015 and had caused a rupture in one of his arteries.
He added: “Every child that we have operated on has been complex, but different. Therefore, it is difficult to know where the limit lies of what can and cannot be done. At the time, we were confident in carrying out this operation on Noah.
The re-implantation of Noah’s kidney did not work as well as expected, partly due to the fact he was on high levels of blood pressure medication.
Recording his conclusion, assistant coroner Richard Brittain said: “Noah had a very complicated medical history. There was a period of relative stability following his operation, but his condition deteriorated. There were several underlying causes contributing to his death, including Alagille syndrome.
“I will record Noah’s cause of death as the combined consequences of a background medical diagnosis and complications arising out of a necessary surgical treatment.”
He then offered his condolences to the six family members sitting in court, as well as to his wider friends and family who could not attend the inquest.
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