“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. Today, I wash more syringes than spoons
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. Their swallow is compromised and needs extra support. 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.
I have blogged in the past about the emotional complexity of my kind of parenting. 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.
Cartons of pre-prepared milk with all the necessary nutrition is our new normal. I wash more syringes than spoons. Monthly weights and regular talks with a dietician are part of the routine. And each month, large boxes are stacked by our front door as we receive a delivery of giving sets, containers and milk.
When we go out for the day we must be prepared with everything we might need. If something is forgotten, a quick trip to Tesco 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 of enjoy life, because getting food into his body safely, does not consume his day.
5-9th February 2018 is #feedingtubeawarenessweek.
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.
The stunning photos attached are by Nicola Parry, a great photographer with a special interest in families who have children with additional needs.
She has 17 years’ experience in special needs education and combines her passion for children with additional needs and photography to capture the beauty and complexity of life.
Hi, thanks for dropping by. My name is Rachel a nurse, writer, speaker, trainer and mum living in Essex with my husband and three sons; one of whom has severe disabilities and life-limiting epilepsy.
As well as doing laundry and endlessly trying to tidy away toys, I blog here and won the 2018 BAPs award for ‘Blogger ‘Making a Difference’ whilst being a finalist in the ‘Practical advice for families’ category. In 2015, I published my memoir ‘The Skies I’m Under’. I think an enjoyable evening should include a good book and glass of gin. Occasionally, I force myself to go for a run in an attempt to counteract a love of salt and vinegar crisps dipped in hummus.