Leonie and her parents live in Germany. Due to her complex medical history, she has been tube fed since birth. Since the age of 6 months she is tube fed via G-tube. Due to her long-term enteral nutrition, Leonie developed a tube dependency resulting specifically in an oral aversion: each time she tasted food or just smelled it,she gagged and vomited frequently. In April 2016, Leonie’s parents decided to participate in the Netcoaching program. Already two weeks after start of the coaching, she received her very last tube feed. She has been tube free ever since.
From the parents
Translated from german
What was your life like before you decided to sign-up for one of NoTube’s programs?
Our daily life was determined by tube feeds and vomiting. She was tube fed 5 times a day, a big amount of tube feeds were vomited (mainly already during the feeding), due to vomiting more tube feeds were necessary … Very often one tube feed was finished when we already needed to start the next one, resulting in a disturbed digestive function.
Although being tube fed, our daughter did hardly gain any weight.
We had a lot of dirty laundry and it was hardly possible to go out without being stressed and anxious about Leonie throwing up.
Each time she tasted food or just smelled it,she gagged. Her oral intake was zero.
Shortly before we decided to participate in the tube weaning program, Leonie suffered from a flu and vomited continuously. It was so much,that she even vomited blood … For me, it was too much to take! Our gastroenterologists wanted to treat her with some anti-reflux medication and discussed to change her PEG- into a PEJ-tube to help decreasing her vomiting.
To me it was clear, that putting in another tube would only lead to continuous tube feeds, a new surgical intervention and might not help with vomiting at all.
What were some of your most memorable experiences during the program?
The moment where she suddenly started to crawl and to swallow food (first, we fed her by a finger-feeder and afterwards even by spoon)! Furthermore, she increased her oral intake stepwise, which was fantastic!
Did you feel that your child received good care during the program and was NoTube’s staff attentive to your concerns?
Yes, especially in the end. All missunderstandings could be solved successfully and all our questions were answered.
How has your life changed since you participated in the program?
It is like living a new life: no vomiting anymore, more time to enjoy daily life 🙂 Now, we have communal mealtimes! It is incredible!
What’s the most awesome thing that has happened with your little one since completing the program?
Fun and laughing during eating – simply to mess around together!