Hi, my name is Nico. I am five years old. I was born with a rare muscle condition called Titinopathy which means I have overall low muscle tone.
This has also affected my swallowing, so I have been tube fed since birth. Tube feeding has been my lifeline and I wouldn’t have been here without it. It has saved my life as I silent aspirate and am unable to eat food by mouth. So tube feeding is the only way to get nutrients in me and keep me strong. My parents look after me and help me with my feeding. When I was young, I had a tube that went into my mouth and the nurse would feed me with a small syringe. Then this was changed to a percutaneous endoscopic gastrostomy (PEG), which is a small device on my belly, when I was just 1.5 months old as the doctor believed that my swallowing difficulty would be long-term. I now have a feeding button on my belly called a MIC-key™
button. I have been tube fed all my life and wouldn’t trade it for anything else. I have recently been diagnosed with type 1 diabetes too. My blood glucose often goes low several times a day and my parents can give me hypoglycaemia treatment via my feeding tube.
One of the cons of being tube fed is that I sometimes feel very cautious of the feeding button on my body. I do feel different to other children, and prefer not to let anyone else see it. I am happy to be fed outside when I am out and about with my parents, but I prefer to be fed in a separate room at school for more privacy while my teacher does an activity with me. I am quite lucky that I don’t have any issues with my button. I know that many other children do have granulation, the extra tissue that grows around the stoma site. I am lucky that I don’t have that, perhaps partly because I also use the button pad, which helps absorb any extra liquid that comes out of the stoma site. I can enjoy activities like other children, but I just need to be a bit more careful that my tummy area doesn’t bump into things so that I don’t accidently get my button caught up with something else.
One thing that I dislike about being tube fed is that I can’t really eat like other children, and I do feel a bit left out at birthday parties as I am surrounded by my friends enjoying their food. However, my parents will try to make me feel included by letting me lick their food for taste. I do feel awkward sometimes when going to a restaurant with my parents, as the waitress always brings a kids menu and my parents always have to say no to them. I think sometimes the waitress must be wondering why my parents do not let me eat, but I will get fed through my pump while my parents have their meals. I enjoy being at the dining table with them, and sometimes I would just say no thank you to the waitress when she brings the kids menu to us. I do get stared at sometimes when I am being fed outside. I think most people are just curious. My parents don’t mind if anyone approaches us to ask about my tube or my feeding machine, but sometimes I wish those people wouldn’t stare.
One other thing that I dislike about my button is the fact that it needs to be changed every twelve weeks. My nurse comes to my house to do this for us. I am always anxious about the button change and wish I didn’t have to have it done, but I also look forward to it, as my nurse will come to play with me. Having type 1 diabetes does make things a little complicated with tube feeding because my prescribed milk releases energy and glucose differently than normal food. So it is a bit tricky to get my blood glucose within range, even with an insulin injection. As I can’t just have a sweet to bring my blood glucose up quickly, hypoglycaemia treatment for me would be different to that of a typical kid with type 1 diabetes. I would rely on liquid-based treatment only.
Being out and about for a long period of time means that my parents have a lot of bags to carry to make sure I have all my feeding equipment and feed with us. Going on holiday for a few days is like moving house as there is a lot of feeding equipment that I need for each feed. When going away, my parents need to make sure that they pack extra milk as, if we were to be delayed, my prescribed milk is the only choice of meal for me and it could be difficult to source elsewhere.
Although there are so many cons of having a feeding button, there are also a lot of pros too. Having a feeding button and needing tube feeding doesn’t mean I am restricted in doing things. It just means that my parents need to plan things in advance to make sure that my feeding is on time and can be adjusted to suit the activity that I am doing. My feeding time can be more flexible, as the feeding amount and speed can be adjusted to fit activities in the day. Although I am tube fed, there are many different ways that I can get nutrition into me. For liquid, like water, my parents usually bolus feed me, which means they just hold the syringe up and let gravity do the work. For milk, I can either be bolus fed or fed via pump. The pump feeding is actually convenient because it means I can do other activities while being hooked to the pump. I usually either sit on my high chair and play games or watch things on my iPad. It also means that I can be fed at night while I am sleeping too. This means I don’t need to get up too early for breakfast before school, as my mum would do the feed while I am sleeping. When I am unwell, my parents appreciate the tube feeding because it means that they can give me medication when needed, without me refusing to take it. Being tube fed doesn’t mean that I can’t enjoy normal food. My mum actually blends homemade food for me and feeds me through the tube. I can enjoy yummy and healthy food like other children. Having a feeding button doesn’t mean that I cannot be fashionable. My mum always buys me a cute button pad to put around my button. Every day at school, my teacher will look forward to seeing what button pad I have on.
All I want to say to other people who are new to tube feeding is don’t be scared. Once you get into the routine, things will get easier. And I would like to send messages to everyone that there is more than one way of eating. Being tube fed doesn’t mean I am different. I am just eating in a different way to others. If you see someone like me being hooked to a feeding pump or tube with syringes, don’t be scared. We are not sick. We are just enjoying our meals like you are.