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Tube feeding has saved the lives of many thousands of children. It is used in many different illnesses, from prematurity to heart disease, reflux to food aversion, and a vast swathe of conditions including some cases where the diagnosis is unclear.
At the time of fitting, if it was a non-emergency treatment, you were probably reluctant to consider this invasive procedure.
Now however your child is thriving. They have stopped looking like they are wearing skin that’s two sizes too big, their eyes are bright, they have energy and look healthy. But you find your emotions may have changed, instead of fearing the tube, you worry about getting rid of it. Scared of a return to the ill child that so terrified you with thoughts of losing them.
Our years of experience have shown that as long as your child is medically stable and you have support from a good team weaning from tube feeding can have benefits for the entire family. Here are a few reasons why we want to help free your family from the feeding tube.
How weaning helps your child
Depending on the age of your child and which type of tube they have, tube feeding can cause them to have many restrictions in day-to-day living. While modern tubes are much easier to manage and live with than earlier models, there are still many things that children find unpleasant and uncomfortable.
Hospital visits are unpleasant for children. They may be scary when they are young and boring when they are older. It often involves travel, stress and time away from friends and family. Trying to keep a small toddler entertained in a waiting area when the clinic is running late is an exercise in patience and inventiveness. (How many things can you make from wooden tongue depressors and sick bowls?)
Being fed via tube can be uncomfortable. If the feed is going fast or the formula isn’t tolerated your child may get abdominal bloating and discomfort, not to mention worsening reflux and the unpleasantness of leaking stomas and granulation tissue. Even though the ‘buttons’ are very discrete, most children cannot wait to be rid of them entirely.
In younger children oral feeding is known to help in speech development, and self feeding helps fine motor control and co-ordination all of which are essential in development and learning.
Air release and feeding can be intrusive when your child is older and wants desperately not to stand out from their peers and they can feel self conscious of the extension tubes, despite your best taping efforts. Being free of the tube can help bolster their self confidence and let them enjoy socializing.
While your child has a tube you may find that it limits choice of clothing. Trying to find clothes which allow access, without putting too much pressure or tension on the tube and, if you use tags to stabilize the tube, having material that will allow you to attach them. As your child grows it is a relief to be able to choose clothes purely on appearance and comfort, and not to have to worry about all these other factors.
How weaning helps you, the parents
Parenthood is a time of guilt and worry. Of course there are plenty of opportunities for enjoyment and fun experiences, and hopefully these greatly outnumber the times of self doubt. Any parent worries if they are doing a good enough job: Are they too strict? Too permissive? Are they allowing too much television? Should their child be progressing faster than they are?
A lot of people seem to use feeding as a sign of good or bad parenting. They can be incredibly judgmental of a poor eater, unless they have one of their own. However much you have been reassured by your team that this is not your fault, most people still have self doubt niggling away at their conscience. Being able to see your child enjoying a healthy appetite will bring you some much needed peace of mind. Studies show, that parents of tube fed children experience higher stress and frustration levels, are restricted in their social life and face higher risk of developing a psychiatric disease like an anxiety disorder or depression. A good team will offer psychological support to the parents to help them overcome these feelings of doubt and low confidence. Support for the parents is just as important as support for the child.
Leaving the house will become much less stressful. No more having to remember a bag full of tape, tubes, dressings, syringes and feeds. You don’t have to plan trips around the tube, and don’t have to worry about pumps and charging.
Childcare becomes a lot easier too. Carers who are confident in dealing with tubes are few and far between. Finally weaning your child means you should be able to enjoy a date night or have a couple of hours to yourself for some much needed relaxation.
How weaning helps the whole family
If you have other children, you may have found yourself torn at times. Should you avoid birthday cakes and eating out so your tube-fed child doesn’t feel left out? Or should you carry on life as normal so your other children don’t feel deprived? Finding a balance can be very hard. Finally being able to eat together and enjoy meals out and family celebrations will help the whole family create happy memories and reduce any resentment that may be brewing between siblings.
After your child has been weaned you should have fewer hospital appointments, freeing up time to spend with your family and avoiding having to send the other children to stay with friends and family while you attend clinics and admissions.
While travelling is possible with a feeding tube, the realities of packing enough supplies and dealing with airlines current rules on travelling with liquids makes travelling unrealistic for most families with tube fed children. Weaning could finally mean you get to have that family holiday, or visit distant relatives.
Here at NoTube we have seen lives transformed by tube weaning with a good, supportive team, and hope to be able to help many more families in the future.