Mathis and his parents and siblings live in the french-speaking part of Switzerland. The feeding situation of Mathis was always very difficult, after many examinations and hospitalizations, he received a nasogastric tube. Unfortunately, he developed a tube dependency, the meal times became a big struggle, Mathies cried, screamed, refused all oral feeding attempts. In summer 2016, he and his parents travelled to Graz to participate in the Eating School. Mathis left the Eating School without his feeding tube!
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 our whole life revolved around Mathis’ tube, numerous appointments and a lot of time used for feeding. We had no social life, trips and leisure time were difficult to handle. Each meal was a real struggle (refusal, crying, screaming, turning his head, spitting…). We felt stressed and frustrated and did not know what else we could do as all weaning attempts had failed.s.
What were some of your most memorable experiences during the program?
The support, the recommendations, the sympathetic ears, the care, the attention offered for each child and parent from the NoTube Team..
That they believed in us and our child, they encouraged us to have faith in the learning-to-eat process and to find ourselves when we didn’t know who could help us in this situation regarding the eating problem of our child.
Did you feel that your child received good care during the program and was NoTube’s staff attentive to your concerns?
Yes, absolutely!!!!! We could ask all questions and share our concerns. The NoTube team was always available for every child and parent, they encouraged us and coached us optimally. We were guided perfectly and are very thankful for that.
How has your life changed since you participated in the program?
We are much more settled. Our family life is calmer and we are able to dedicate some time to our other children. Our son Mathis is now tube-free since one and a half months. He learned to sustain himself fully orally and is developing well. His weight is stable, even though he does not eat large volumes yet. He makes progress. We have no medical appointments anymore and we don’t have to see specialists for his eating disorder. Therefor, I must not miss my work. The team which guided us before our participation in the eating school was surprised by the results after only two weeks, while no one could find a solution here in Geneva since one year. We must not carry our tube equipment with us for every single trip, not even talking about the fears of him pulling out his tube, etc…
What’s the most awesome thing that has happened with your little one since completing the program?
That we are finally able to go swimming without the fear of losing his tube in the pull or that a child pulls it out. The first time when he ate half a nectarine. To see him eating without spitting. To see him sitting in front of his plate and eating 100g on his own…