For some parents, learning their child needs to use a feeding tube can make them feel anxious and overwhelmed, but as part of Feeding Tube Awareness Week we wanted to share a heart-warming story that showcases the incredible benefit a feeding tube can bring. There are many reasons both children and adults are tube fed, and it’s a life-saving process for those who are unable, or have limited ability, to eat by mouth. Yet still it can be misunderstood by many.
When Kirsty’s daughter Ella was born, she had a few issues breathing, and some problems feeding. Kirsty’s a mum of four, so she knew instantly that something wasn’t quite right. Every time she gave Ella her bottle, she would choke and cough and become distressed. To begin with, the doctors put it down to common issues like colic or reflux, but Ella just got worse and worse. Things came to a head when she had her third dose of polio drops – as soon as the first drop went into her mouth, her lips turned blue and she began to choke.
A trip to A & E followed, and changes to Ella’s feed, but nothing seemed to help the coughing and choking, in fact the problem worsened. When Ella developed a chest infection, the decision was taken to perform a barium swallow on her; within a couple of mouthfuls it became clear that Ella was aspirating. In other words, Ella’s milk had been going down into her lungs rather than her stomach, leading to the coughing and choking, and increasing the risk of a chest infection. The doctors quickly concluded that Ella would need to start being fed via a nasal tube, and broke the news to Kirsty and her husband. “What do you mean, nasal tube fed? We don’t understand,” they replied anxiously. “When will she be able to have it removed?” The doctors couldn’t tell them how long it might have to stay in for, and that was when their feeding tube journey began.
So how did the family adjust to life with a feeding tube? Kirsty recalls how scared they all were to start with in case they did something wrong, and how the tube was quite difficult to manage, but they had a great team of nurses who made daily visits and checked everything was working correctly. However one weekend the tube was accidentally pulled out, and Kirsty had to wait in A & E for several hours with a very hungry Ella until it could be put back in. It was at this point that Kirsty realised she would have to learn how to insert the tube herself, for Ella’s sake.
She learnt very quickly, which of course was a real benefit to Ella, since that precious tube was providing her with all the nutrition she needed. However nasal tube feeding isn’t without its complications, especially if it doesn’t get put into the right place, or moves around, so when Ella was offered a PEG (percutaneous endoscopic gastrostomy) instead, just before her 1st birthday, it didn’t take them long to make the decision. A PEG is a different kind of tube from a nasal one, as it goes directly through the skin into the stomach. The tube was fitted during another operation Ella was already undergoing, and as soon as it was in place Kirsty saw a noticeable difference in her baby. Ella’s coughing and choking simply disappeared, she started smiling more and finally began to look like a normal little baby.
In the meantime, more tests followed, mainly from a genetic perspective, to see why this was happening to Ella. All the tests came back to say everything was ok, making for a very confusing time for Ella’s parents. Finally hypotonia, also known as floppy muscle syndrome, was diagnosed, and Ella was referred to a neurologist who said they would simply need to keep an eye on Ella to see how she developed. It wasn’t until much later on that the mito diagnosis was finally made.
Ella is now 7 years old, and these days the PEG is simply part of her daily routine. Kirsty finds it so much easier to manage than the nasal tube, and she can change it in just a few minutes, usually while Ella is playing on her tablet! She’s attached to the tube during the night, and then for three feeds over the course of a normal day, but other than that she can be free from it. If she’s having a good day, Ella can even eat a little bit of soft food by mouth, with her favourite food ever being spaghetti Bolognese, and her parents are very open about letting her try tiny amounts of different foods if she asks to.
Using a feeding tube certainly hasn’t held Ella back. She loves family meals, and often has her own plate of food in front of her to pick at during large gatherings. At school, she sits with her friends and nibbles on her packed lunch if she’s feeling up to it; occasionally she may be too tired, in which case she’ll skip the lunch hall in favour of staying somewhere a little quieter and more relaxed, but Kirsty leaves it up to Ella to make that decision – she’s always very vocal about how she’s feeling!
There's also the added benefit that using the tube has meant fewer hospital visits for Ella and Kirsty. Through the tube, Kirsty can make sure Ella's getting all the hydration and nutrition she needs, but she can also use it to give Ella any medication she might need. So if she does get a bit poorly, she can usually stay at home to recover, which of course is more comfortable for her, and much better for everyone.
Kirsty and her partner have always made the PEG completely normal for Ella, and consequently Ella has never asked why it’s there. When she’s not feeding, neither the tube nor the button are visible, but if people do ask questions, Kirsty is instantly reminded of how fortunate they are.
“If it wasn’t for that tube,” she explains, “Ella wouldn’t be here. Whoever invented it is amazing! It really has changed our lives”.
Of course, there are times when Kirsty wishes Ella didn’t have to use the tube for feeding, but at the same time she’s fully aware that it’s what’s keeping her daughter alive. She values the companionship she’s discovered through The Lily Foundation’s Facebook group, and if she ever feels tired or a little down, she knows there will always be someone there to provide a kind word, some support and understanding.
There are thousands of children and adults all around the world who are tube fed, for many different reasons. You can find out more about tube feeding in general, and Feeding Tube Awareness Week in particular, at www.feedingtubeawareness.org.