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This article is written from the perspective of a medical doctor (Marguerite Dunitz-Scheer) involved with tube management and weaning for nearly 30 years and a mother of 6 healthy born children, along with 2 other mothers (Krista Puruhito and Aurélie Charrière) who have been through those difficult processes with their own children supported by their knowledge and experience gained in the process.

There are many questions every Mom of a tube fed kid asks herself. We tried to get through your emotions and get answers to your concerns that are most likely to bother you all the time.

How can I learn to control my fears?

Please don’t try too hard to control your fears, in any case not all the time!

What is important is to differentiate between fears about your child (which have their origin in the past and in your mind) and facts, which might be responsible for actual worries or even the need for taking actions. What is so crucially important about your fears is that they have an impact and influence on your daily behavior and the atmosphere between your baby and yourself greatly. Unintentionally they creep into the air surrounding you and your baby and into the expression of your face and the pitch of your voice. This can prevent your baby from receiving any happy and proud responses from you, even in moments when it is doing well and trying to live up to your expectations with its full strength and power.

Why am I frightened to stop tube feeding even more?

child with a feeding tubeWhen your baby was born it was taken care of by others. After a period of shock you adapted and got used to all those drips and tubes and monitors and the nurses and doctors tried hard to explain everything. After a while one even got used to that! Your role was always to trust and visit and care and love, but not really to be fully “in charge” of everything. The medical team was! But once arrived at home, everything changed. No more monitors, no more nurses and medical rounds, but lots of time on your own. You don’t only feel but you are all on your own with your baby. And then there was this issue of feeding your baby, which had been solved perfectly by the tube and the tube feeding routine. You might even dread or hate tube feeding but you have gotten accustomed and find it hard to change things. Especially as the medical team in charge for tube placement is not really interested in any kind of tube management issues, you even feel a bit bad about thinking of wishing your baby to learn to eat naturally.

One seems to adapt and get used to difficult or even dreadful situations but changing them might even seem more frightening. When your baby was receiving the tube, everyone was talking you into this step being temporary, necessary and good. Now you find yourself much more alone in thinking to make the next necessary step to get rid of the tube again and most of the professionals who were involved in tube placement seem to have no idea of what to do to end the temporary intervention. In addition to nobody having any specific information, they don’t even seem to be or feel responsible.

Why does nobody understand my fears?

It’s just not fair, you and your partner and your baby have been facing a rollercoaster of emotions, stress and challenges in the past months of which you had not even dreamt they existed before. Your anxieties cover real issues about possible risk of severe bradycardia, dehydration, lack of electrolytes, nutritional deficits but also very general feelings of loss, separation, catastrophes or even death. Although your baby has probably survived numerous dangerous and even life-threatening situations and has proven to be a fighter and a survivor, you just can’t relax or face life without monitoring your baby intensively. You might have even been told explicitly that the medical complications were too severe and your baby would not survive, but then it did! You are going through turmoil of feelings you have never experienced before in your life. And even though your friends and family are trying to be kind and supportive, you are terrified and full of questions nobody seems to be able to understand or answer for sure. You feel all alone with all of this!

But No, you are not!

bright picture of hugging mother and daughterIf you are lucky you will find other mums and dads who understand and share your observations and feelings and fears and if you are lucky, the team helping your baby survive will be gentle and considerate and help you get through this dramatic period of your life, when the world seems to be collapsing around you.

What can be done?

Try and find a balance of taking as much time being with your baby as possible but also structure the weeks to come with certain pleasant routines and rituals for yourself. Keep your gym class, meet your best girl friend, visit your parents, try and take care of yourself and the father of your baby as good and as much as possible and talk about your feelings and fears. Ask as many questions as you can think of, write a list and prepare yourself for every doctor’s visit and talk and listen to what others will try and share with you. The big world out there will be spinning just as before and does not take any notice of you, your situation and your fears. But all the more, please try and build a small, protected, personal shell of a few close people and share your fears, doubts, hopes and fantasies with them. Maybe it might also help you to write letters to your baby or keep a diary to be able to read and report later. All mums and dads are different and talking might not be the solution for all, but find a way to share and not to feel all alone.

Marguerite Dunitz-Scheer