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Why I want to raise awareness of the challenges of tube-feeding a child
HE’S been in and out of hospital since he was just a few weeks old. For one-year-old Noah Stevenson was born with a number of health conditions and had to be tube fed from the age of five months.
Now his mum Danni Jones, 20, who lives with her young son in Ringwood Road, Poole, is keen to raise awareness of the challenges of tube-feeding a child.
“There is a real lack of awareness in this country so you can feel very alone as there are no support groups locally and I don’t want to take him to an ordinary parents group,” she explains.
“He always struggled to take a bottle – he would often choke or gag but it was passed off as just a reflux issue. He was vomiting around 17 times a day.”
It was only when Noah was admitted to hospital at five months with bronchitis that it was discovered he was aspirating on to his lungs and he had a nasal gastric tube fitted.
Danni continues: “It was very stressful at first because he kept pulling the tube out and would turn blue.
“I couldn’t bear to be in the room when they were fitting it.
“But if it wasn’t for the NG tube, Noah wouldn’t be here.
“He couldn’t swallow and he would have developed pneumonia.”
Subsequent MRI scans have revealed a cyst on his brain which can affect the swallow reflex.
Noah has also been diagnosed with a heart condition and is currently being tested for a chromosome disorder. In December he was fitted with a gastrostomy tube which delivers nutrition directly to the stomach.
But, despite all his health conditions, Danni says Noah is a happy little boy whose big smile won a local photographic competition on Facebook.
“He takes it all in his stride and is always smiling. The gastrostomy tube has made life much easier for him – he sleeps much better now.
Danni adds: “If there are any other parents who are having a similar experience I would love to hear from them as I know how isolating it can be.”
Email danni.jones93@google mail.com