06/02/2025
It’s . The journey is different for everyone.
“Our recommendation is that you never feed your son orally again.”
These words were spoken to me as I sat wedged along a corridor at Great Ormond Street Hospital.
No box of tissues.
No comfortable sofa.
Less than ten words were used to inform me that my son would never eat another birthday cake, enjoy a sunny day ice-cream or tuck into an Easter egg.
S had just undergone a video-fluoroscopy that showed he was silently aspirating. A small amount of food or drink was trickling into his lungs whilst he was being fed. Sometimes he coughed, sometimes he didn’t. I was told some parents make the decision to live with the risk of chest infections and still feed their infants. It was a question of quality of life.
I imagined how it felt when food ‘went down the wrong way’ and considered the time it took for S to eat the smallest amount of pureed food. My husband and I talked over the issues before I silently packed away all the toddler feeding paraphernalia from our kitchen; leaving a few plastic spoons and plates in the cupboard for our friend’s children.
For many children (and adults) their journey into artificial feeding is less dramatic.
Sometimes, it becomes increasingly difficult to get enough calories into a child. A stroke, throat or bowel conditions can all initiate the need to artificial feeding. Eating normally during the day can then be supplemented with a specialist feed through the night. But every time, the emotional turmoil of losing some of the joy of food can be felt.
As a mother, losing another maternal role was heart-breaking.
Over a decade after that corridor moment, S is fed solely via the PEG tube in his stomach. He sits at the table in his comfy chair and listens to music while we eat. He shows no signs of missing food. When we go out for a meal we take the iPad for him to watch a film, as his special treat. I wash more syringes than spoons.
When we go out for the day we must be prepared with everything we might need. If something is forgotten, a quick trip to the supermarket isn’t going to do the job. And forgetting the pump lead for charging whilst on holiday – well that would be a really stupid thing to do!
Most importantly, the feeding tube is quite simply a life safer.
S has only ever had two chest infections in his life. He is robust and healthy, because he gets the calories he needs - without a struggle. He has the best chance to enjoy life, because getting food into his body safely, does not consume his day.
This week is .
Feeding tubes are a life-saving medical interventions for many people.
Please share this post and educate the wider public that there are many medical reasons children and adults are tube fed. There are challenges that families face in the day-to-day life of tube feeding, but families like ours are used to overcoming challenges.
We do it every day to see our children thrive.
Hear of our feeding story on The Skies We’re under podcast Season 1 - food glorious food!
Apple podcast
https://podcasts.apple.com/gb/podcast/the-skies-were-under/id1608217096?i=1000556376432
Spotify
https://open.spotify.com/episode/0XB4E41xEq7d089uZLZ2xJ?si=XrfAky-wSjOE5Gkk1A6QjQ