“Feeding Tube Awareness Week has a special place in our hearts. Our special little boy, Jake, lives with a feeding tube into the stomach to provide nutrition, due to his body struggling to absorb enough calories to grow sufficiently.
“He was born with a genetic disorder called Hirschsprungs Disease where during the first few weeks of pregnancy, the bowels fail to develop properly resulting in all his large bowel and part of his small bowel being removed, leaving him with an ileostomy and stoma bag. Fast forward 3 years, several long stays at ‘Hotel Heath’ as my husband calls it and after infections, a failed pull through attempt, and multiple period of TPN (total parental nutrition given intravenously) Jake was left not wanting to eat much at all and what he did eat his body couldn’t absorb sufficiently.
“I remember it like it was yesterday when we were sat in the play room on Island Ward and told Jake needed a gastrostomy to fit him with a feeding tube. We had tried everything to get him to eat. The play therapists were brilliant with messy play and our dietitian was so supportive and dedicated, but we knew deep down we had to try something new despite having to put our boy through another surgery which potential may not work.
“Thanks to the fantastic Gastroenterology team at the children’s hospital, their tireless research across the country and liaising with other specialists in the hospital, Jake is thriving better than ever before. To look at Jake today you wouldn’t know what lies beneath his clothes, how much he has fought since the day he was born, and the months he has spent in hospital where we felt like we would never leave. Behind every feeding tube is a story, it is a life line, and I hope that by sharing Jakes story it can help normalise and bring much needed awareness. The care given to Jake by the nurses on Island Ward was brilliant to the point where Jake would say ‘we are home’ when we had to go back to the ward after our last admission.”
