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Most of the families we meet at NoTube are veterans of many, many hospital stays. Despite their extensive experience our clients often describe arriving back home as a strange culture shock of relief, paired with the stress of trying to settle back into a routine. Suddenly they have to think and plan groceries, chores, socialising and clothing after the artificial environment and routine of a paediatric ward.
One of our parents described the unexpected challenge of clothing her young child. “After weeks in the baby unit, where she’d spent most of the time in a vest or just a nappy, suddenly we had to dress her to suit the cold winter. We had a collection of beautiful, cosy winter clothes thanks to our kind and generous family and friends, but all these lovely clothes had completely impractical fastenings when it came to managing a G-tube.”
Within the hospital the focus is on medical feeding tube problems; reflux, leaking, granulation tissue, it’s only when you get back to your home environment that the practical feeding tube problems become obvious. Even without having to manage a feeding tube, it is frequently the case that the loveliest baby clothes have the most awkward fastenings. Trying to find nice, comfortable clothes for your child while bearing in mind the need for access to the tube can be a challenge, so here’s a few tips to help you adjust.
To start with we must at least mention the commonly experienced nasogastric (NG) tube. These are usually only used as a temporary measure and shouldn’t have too much effect on choice of clothing. The only thing we recommend you remember is to take care when using clothes that are put on or removed over the head, and make sure they have a nice wide neck or neck-side fastening to avoid the risk of catching on the tube.
Our main focus in this article is the use of gastrostomy or jejunostomy tubes (G-tube and J-tube respectively). These are used when tube feeding is likely to be a longer term treatment and have many advantages. Most modern tubes have a small ‘button’ port which stays in place when they are not actively being used for feeding, they are discrete and easily managed.
One of the main priorities is clothing that is mentioned by our parents is access, especially with feeding tubes in babies. In this age range the clothes are designed to put on and take off easily via popper or button openings, however it is helpful to be able to get to the tube directly without disturbing a sleeping child. Luckily you rarely need to buy specialised clothing. ‘Kimono onesies’ have fantastic easy access and are available in a wide range of sizes from regular clothing outlets. If using regular pyjamas try getting open footed ones so you can run the tube extension down the leg for night feeding.
Nappies often need to be turned over at the waist to avoid pressing on the tube site, newborn sizes often have a cut out waist to avoid the belly button area which can be helpful. If you are considering using cloth nappies you can choose types that are ‘low rise’ or with adjustable waist levels to make this easier.
If you have an older child you may need to balance keeping explorative toddler hands away from the tube while maintaining easy access for parents and carers. This is where you may find specialised vests with ‘joey pouches’ or zipper access helpful. The only downside to these is there are limited suppliers and they can work out very expensive. Some suppliers have a secondhand option on their websites, and you may find other parents in support groups who are willing to pass on or sell outgrown clothing.
In any age group you can often make do with regular clothing. Separate tops and bottoms makes access simple, but many parents report struggling to find clothes that stay up on their slim children. Some parents choose to keep the extension tubing attached to the button, so it can be threaded through an opening in the clothing. There is a possibility of this causing tension on the tube site and worsening the risk of granulation tissue and leaks. We have seen some ingenious techniques of creating tabs using heavy duty tape then pinning the tube to clothing to prevent tugging. Although this has its disadvantages, it can be especially helpful in an older child who is self-conscious about having to expose themselves if you are out and about.
It is worth remembering with separate items to check the waistband regularly, and if you are about to start a long car journey or other activity with prolonged sitting, consider loosening it or turning over the band to reduce the risk of it pressing on the tube site.
One fantastic invention is the ‘tummy tunnel,’ an iron-on patch that allows you to make a hole in the clothes without risk of tearing, and is available in lots of bright and cheerful patterns from a selection of suppliers. If you have a girl who loves wearing dresses, but doesn’t want the extension tube to pull her skirt up, this may provide a way of modifying the clothing in a pretty way, and can be improvised at a lower cost with any iron-on patches meant for repairing torn clothing. Some parents have even let their creative sides loose and designed and made their own clothing.
It is possible to manage a feeding tube with normal store-bought clothing and you shouldn’t feel pressured to spend a huge amount on specialised items. The aim of these tips is to help make life a little bit easier, we know you have enough pressures with the challenges of child-raising and tube feeding; and little changes can just make day to day living that bit simpler.
Our NoTube team have years of experience meeting children and families with feeding tubes and are always happy to help with advice on every aspect of tube feeding and weaning.