Noah Dixey had been in and out of hospital his entire life, and required 15 types of medication to keep him alive, an inquest was told as his parents paid tribute to him
Image: Family Handout)
The parents of nine-year-old boy who died in Great Ormond Street Hospital following surgery had been told he had a “one per cent chance of death”, an inquest heard.
Noah Dixey had been in and out of hospital his entire life, and required 15 types of medication to keep him alive, an inquiry was told.
Saint Pancras Coroner’s Court heard how the “brave” boy, from Leicester, in the East Midlands, was diagnosed with an incredibly rare genetic disease called Alagille syndrome just eight weeks after he was born, MyLondon reported.
The incurable condition affects around one in every 100,000 children, and is incredibly difficult to manage.
He survived a number of operations throughout his short life, and on October 26, 2021 – one day after his ninth birthday – he underwent a 14-hour long open surgery to remove a stent (a metal tube inserted to keep blood flowing) that was causing a blockage, and to attach his left kidney to another source of blood flow.
Devastatingly, the transplant was unsuccessful and despite his condition appearing to improve at first, he died three days later.
Although his condition mainly affected his liver, Noah also suffered from heart complications, narrowing blood vessels, and an aneurism on his brain. He had also previously lost his right kidney.
The court heard how Noah’s family was originally told that the operation carried a “one per cent chance of death” – but when doctors started the procedure, they realized his condition was worse than they originally thought.
Dr Colin Forman, a transplant and vascular surgeon at Great Ormond Street Hospital, explained that the operation, which had previously been successful on around 20 other patients, was made more complex due to the stent – which had been in his abdomen since 2015, causing a rupture in one of his arteries.
He said: “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 court also heard how the re-implantation of Noah’s kidney didn’t work as expected, partly due to the fact he was on high levels of blood pressure medication – which carries an extra risk.
Speaking after the inquest, Noah’s heartbroken parents Gemma and Scott 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.”
Paying tribute to their son the day after his death, Scott and Gemma told their loved ones: “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”.
Recording his conclusion, assistant coroner Richard Brittain told the court: “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.
George Holan is chief editor at Plainsmen Post and has articles published in many notable publications in the last decade.