As the Tube Feeding Awareness Week draws to a close Arfon AM Sian Gwenllian meets a local family who are well-versed in this specialist process of feeding. Ms Gwenllian is keen to raise awareness of the issues faced by those living with an adult or child who are dependent on this method of feeding.
Archie John Ngaia-Williams from Llanrug is one-and-a-half years old and was born with a very rare condition called Ohtahara Syndrome that means he has regular seizures that have affected his brain.
“He was fitting while I gave birth to him,” said Katie Williams, Archie’s mother. “He fell ill with Sepsis at a week old and then stopped breathing which meant that he was on a ventilator in Arrow Park Hospital. But he fought really hard to come back from that and he is now a very happy little boy who enjoys going for a walk and listening to different voices. He can’t see much but he enjoys cuddles and attention and he can recognise different people’s voices and will smile and laugh.”
Archie is fed special milk through a tube that runs from his nose down to his stomach, and Katie and her mother Sarah Evans have received training in how to check that the tube is in the right place and that it is clean.
Said Sian Gwenllian, “The first awareness week was held back in 2011 with the mission of being to promote the positive benefits of feeding tubes as life-saving medical interventions. The week also serves to educate the broader public about the medical reasons that children and adults are tube fed, the challenges that families face, and day-to-day life with tube feeding.”
Katie Williams has been raising awareness this week on social media as have many of her friends from around the world who have children who are fed like this.
“There are only 250 children and adults around the world who have an official diagnosis of Ohtahara Syndrome and it’s great to be able to chat on Facebook groups with other parents who have children like Archie. When we’re out and about people do tend to look at us and sometimes ask me why he has a tube so it would be a good thing to raise awareness so that people know why children like Archie need to be fed like this. I didn’t know anything about feeding tubes before I had Archie and it’s important that we all educate each other. It’s also important that children who are the same age as Archie know why he needs a tube, so if adults have more knowledge they’ll be better equipped to explain to their children.”
Said Sian Gwenllian, “It was lovely to meet little Archie and his family. He is a very contented little boy and the tube feeding obviously suits him and is safer in view of him being unable to hold up his head or sit up. It’s important that we are all aware of those children and adults who live differently to us for medical reasons, and I’m very grateful to Katie and her family for drawing my attention to this important week.”