A two-year-old boy from Gateshead has died following a battle with a rare bowel condition. Jaxx Carr, from Felling, was diagnosed with Hirschsprung disease when he was eight weeks old.
Diagnosis and Treatment
Jaxx struggled to pass bowel movements after birth and began projectile vomiting. Medics initially suspected a twisted bowel, but a biopsy revealed the rare condition. He underwent major surgery to remove part of his colon and had three further procedures to ease his bowel movements, one under general anaesthetic.
His family is now working to set up Jaxx's Chapter following his death in March, aiming to help other families of children affected by the condition.
Final Days
On March 22, Jaxx became unwell with sickness. His hands and feet turned freezing cold, and he lost consciousness. His parents, Jaimie-Lee Wells, 35, and Graham Carr, 44, performed CPR until paramedics arrived. He was rushed to the Queen Elizabeth Hospital in Gateshead, where healthcare professionals continued efforts, but sadly, they could not save him. His cause of death has not yet been confirmed.
Jaimie-Lee, also mother to Laisey, 16, and seven-year-old David-Jay, known as DJ, told ChronicleLive: "I'm just numb. We did everything for Jaxx so when that was gone everything went quiet. The silence was deafening. It was just a horrible place to be."
Family's Memories
She described Jaxx as "so chilled" and "happy all the time considering everything that was going on inside." He loved Bluey, Cocomelon, and anything with wheels or water. "Anyone who met him would say 'What a placid little boy'," she said.
Hirschsprung's disease is a condition mainly diagnosed in babies and young children where poo becomes stuck in the bowels. It can sometimes lead to a bowel infection called enterocolitis, which can be serious and lead to sepsis.
Early Life and Hospital Care
Jaimie-Lee had no pregnancy issues before Jaxx's birth at the QE in May 2023. After returning home, they noticed minimal bowel movements. Assessments led to the diagnosis at two months old. He was rushed to the Royal Victoria Infirmary (RVI) in Newcastle for an operation to remove between 10cm and 15cm of his colon.
During his short life, Jaxx also had three anal dilation procedures. On the day he died, his hands and feet went really cold, a possible sign of sepsis in children. The couple initially called 111 before ringing an ambulance.
Jaimie-Lee recalled: "He crawled onto my knee. He moved his head back off his shoulder and looked right in my face. I thought something isn't right here. The fingers on his right hand were really tense. I thought he was going to have a seizure." She told Graham to ring 999, and as Jaxx lost consciousness, they began CPR.
"I was doing the compressions and Graham was doing the mouth to mouth," she said. "They gave him three shots of adrenaline and they worked on him for what felt like hours. The air ambulance came and they transported him to hospital by road."
Charity Plans
The couple, who work in the equestrian sector, were warned to watch for mottled skin, green vomit, or blood in vomit or poo, none of which Jaxx had. They now want to establish a charity to help other families dealing with Hirschsprung's disease.
Graham said: "We are setting up a charity in Jaxx's name. There's no help for parents dealing with Hirschsprung disease. We want to get somebody who's very knowledgeable in it and get a hub we can work from. We want parents to be able to come to the hub and speak to other families. Me and Jaimie-Lee are going to do courses so we can help advise people."
Jaimie-Lee added: "There's not many people that I have spoken to that have heard about it. I knew it was a thing but I didn't know anything about it. Graham had never even heard of it. I think people need educated. They need to know what this condition is."
More than £8,000 has been raised towards Jaxx's Chapter from the youngster's nursery, and another £1,000 has been raised by DJ's school. More than £1,800 has also been donated to a Go Fund Me page set up by Jaxx's older sister Faye, 22.
