Louis and his family live in Germany. He was born with a genetic disease and received a nasogestric (NG-) feeding tube right after birth. He suffered from insufficient sucking and dysphagia after receiving a tracheostomy. Due to long-term tube feeding, Louis developed a tube dependency resulting in active food refusal. He vomited several times a day and showed a massive sensory and orally hypersensitivity.
In April 2017, at the age of almost 7 months, Louis parents decided to participate in the Netcoaching tube weaning process. During Netcoaching his oral aversion was gradually desensitized. He began to accept small amounts of fennel tea and was fed orally via a finger feeder. During Netcoaching the family decided on recommendation to take part additionally in our Eatingschool in Graz in June 2017. There, Louis started to increase his oral intake steadily and Louis’ tube could be pulled out one and a half weeks afterwards. Since then, Louis and his family enjoy their tube-free life.
From the parents
Translated from German
What was your life like before you decided to sign-up for one of NoTube’s programs?
Our everyday life before NoTube was scheduled – tube feeding, vomiting, my son’s feeling uncomfortable, fear of leaving, no normal activities, developmental standstill.
For me as a mother, especially re-inserting and pulling out the feeding tube was an unpleasant experience.
Louis suffered from a severe oral aversion with no improvement in sight. A PEG feeding tube should be placed.
What were some of your most memorable experiences during the program?
They believed in my son from the very beginning and that was very good. Being with other families with similar problems strengthened my confidence that my Louis will succeed too. We as a small family learned a lot from the therapists! Louis’ tube was successfully pulled out after 1.5 weeks and he was very proud of himself and suddenly gained much more self-confidence and increased in his personality.
Did you feel that your child received good care during the program and was NoTube’s staff attentive to your concerns?
Very well treated and we were able to share our thoughts with the therapists.
How has your life changed since you participated in the program?
Louis is more confident, he is making great progress in his development. He is more alert, eager to discover, laughs and explores much more … a completely different boy. Additionally, for us as parents, our everyday life is more normal, more relaxed and we enjoy our son from a completely different point of view. No more vomiting, no more discomfort… a happy baby 🙂
What’s the most awesome thing that has happened with your little one since completing the program?
When Louis took something to eat independently, interested in tasting different foods, licks and plays with them.