Myrtille and her parents live in France. She was born with a rare chromosomal aberration which influences her development. Since the age of nine months, Myrtille is fed by NG tube. Myrtille suffered a lot during tube feeding, she vomited regularly and developed a severe oral aversion. At the age of 20 months, Myrtille and her parents visited an Eating School in Graz, at this point, Myrtille accpeted no oral feeding. At the Eating School, Myrtille learned to eat with pleasure. Due to the severity of her underlying condition, Myrtille still needed partial tube feeds. She was supported by Netcoaching for several months after the Eating school to optimize the situation. In the meantime, a G tube was placed, in order to let Myrtille eat without a tube in her throat. Now Myrtille can enjoy eating, during phases when she can’t eat enough on her own (e.g. during/after seizures), she is supported in the best possible way.
From the parents
Translated from french
What was your life like before you decided to sign-up for one of NoTube’s programs?
Before our participation in the Eating School we felt completely lost, without any medical or paramedical support. We could not understand our daughter and her needs, nothing we were told worked out, on the contrary, the situation got even worse. We were really helpless.
What were some of your most memorable experiences during the program?
The warm-heartedness and the confidence in us. For the first time we felt as nobody judged us, disagreed… we worked together, not to fit into a frame but to learn going towards her and being abel to react to her needs!
Did you feel that your child received good care during the program and was NoTube’s staff attentive to your concerns?
Yes, sometimes we would have needed a little more time with team members.
How has your life changed since you participated in the program?
RADICALLY! Not so much from a technical point of view as we had to interrupt the wean due to medical problems. But regarding our role as parents, the communication with our daughter, the understanding of her needs, we found our place and feel much better. This made us stronger and calmer in dealing with the medical world.
What’s the most awesome thing that has happened with your little one since completing the program?
To see her eating joyfully,trying different things! Even though she still has a tube, she makes oral experiences (tasting cookies, drinking a view sips…) what was not possible before! Some time ago a medical doctor was able to examine her chest, she opened her mouth without crying!