Meet Élise!

Tube-free since 2015
Meet Élise!
Tube free!

Élise and her family are from Germany. Élise was born with a rare genetic defect. Immediately after birth, there were complications. Élise suffered from respiratory distress and had to be artificially respirated. In addition, she was born with a cleft palate and fed via a nasogastric tube from birth. As a result of the long-term tube feeding, Élise developed tube dependency and along with it came a lack of desire to drink and a refusal of food. At the age of 3.5 months, Élise started the Netcoaching program. Within a few days she made great progress. Élise began to drink breast milk and her tube could be removed. Since then, she has been feeding entirely orally.

From the parents

Translated from german

Our daughter Élise has always been a very special child. For example, she decided to enter this world bottom first. As a result of her rapid birth, she suffered from respiratory distress, received respiratory support during the first hours of her life and, as a result of a split in her hard and soft palate, which we had not been aware of before, a feeding tube was placed immediately. On her second day, we could finally hold her in our arms for the first time. Élise fought bravely through life in hospital and attempted to drink. While she was very motivated at first, she always got tired very quickly and did not gain enough weight. Our intuition told us that this form of nutrition was not right, but we trusted the advice of the doctors in charge. Later, it turned out that Élise suffers from a rare genetic defect. Unfortunately, this also manifested in hypotonia of upper trunk. When we left the hospital, she was drinking about 1/3 of her daily requirements. What followed were some truly awful weeks, during which we, as we now know, stuffed our child with breast milk through the tube, so that she would gain weight. Élise became tube dependent and took less and less food orally. We were in a vicious circle of overfeeding, vomiting and anxiety about swallowing. Two attempts to tube wean at home failed. Unfortunately, none of the professional helpers in our environment had any real experience in this area. We began to research on the internet and discovered NoTube, which is the best thing that could have happened to us. When Élise was 3.5 months old we started the Netcoaching program. The exchange with another affected mum, who had successfully gone through the program, was also a massive help. Of course, in the beginning I was sceptical, because the team often advised me to trust my intuition, which I had consciously ignored up to this point. But this was exactly the right thing to do. I could trust Élise and she enjoyed regulating her own amounts of food. After only ten days, the tube, after two previous attempts, was out for the final time and has stayed that way until today. Élise has overcome her fear and now even gets excited when she sees her bottle. Even her development has progressed in leaps and bounds and our family can now finally begin to live a normal, everyday life. Our wholehearted thanks go to the NoTube team. I can recommend them without reservation.

 

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