Eating is something that can be easily taken for granted in a world of such indulgence and choice. Everywhere you go there is a coffee shop, a fast food restaurant and people eating on the go. Have you ever stopped and thought about what it must be like to not be able to eat, not to want to, and/or more devastatingly have your body fail to absorb the nutrients it needs to thrive and grow. Feeding tube awareness week has a special place in our hearts with our special little boy Jake living with a feeding tube into the stomach, to provide nutrition due to his body struggling to absorb enough calories to grow sufficiently.
Being born with Hirschsprungs Disease, during the first few weeks of pregnancy the bowels failed to develop properly resulting in all his large bowel and part of his small bowel being removed, leaving him with an ileostomy and use of a 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 periods 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. We had tried everything to encourage him to eat. Play therapists were brilliant with messy play, our dietician 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 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 Noah’s Ark Charity that supports the hospital are constantly doing fun family events to raise money. The Great Welsh Walk starting in May 2019 is a 7 day challenge where you can join for one, two or all seven days to raise money to help support our children in their time of need. Overnight accommodation is available (where applicable) and we as a family hope to see you at Newbridge to start the last leg of the walk to Cardiff Bay! For more information please visit noahsarkcharity.org/greatwelshwalk .
Another annual event that proves a great family day out for all is the Noah’s Ark Teddy Bears Picnic in the Spring usually held in Cardiff. This year it will also be in our local city of Newport where there will be a kids disco, crafts, character visits, face painting and of course a picnic! Having a child that is Coeliac can cause stress at events like this but with the charity also catering for dietary needs it’s a win win! For more information please visit noahsarkcharity.org/teddybearspicnic .
Social media is showing parents and carers across the country share their story including many adults of how a feeding tube has saved their live. I walk with pride when Jake is along side me attached to the pump. Everyone has something which makes them unique and if it’s a feeding tube then let’s embrace such a brilliant piece of life saving equipment. I know I count my blessings everyday that we took a chance and Jakey has his.
Until next time thanks for reading. Rachel x