Bennet, his siblings and his parents live in the US. Little Bennet was born with hypoplastic left heart syndrome, a severe congenital heart defect, in which the left ventricle of the heart is severely underdeveloped. An open heart surgery was necessary. Due to his severe medical condition, he received a g-tube 5 weeks after birth. After a successful heart surgery, he was allowed to eat orally, but Bennet didn’t succeed in the transition to oral feeds because he had developed a tube dependency, resulting in oral aversion, food refusal and recurrent vomiting. In January 2014 when Bennet was 16 months old, his parents signed up for NoTube’s Netcoaching program. Bennet learned to eat immediately and all tube feedings could be stopped within less than one month. Bennet did well during the wean, he was happy, playful and active all the time. He started eating different solids (veggie straws, pizza, pasta…), semi-solids (pudding) and drinking water. Since then, Bennet is doing well and the whole family’s life has changed for the better. Bennet is much happier without tube feeds. He is able to participate in family meals and enjoys different kinds of food.
From the parents
When Bennet received his G-tube at 5 weeks old, after having heart surgery, we were told he would just start eating eventually. He never did. We became incredibly discouraged with our son’s tube dependency. Bennet was miserable as well. He would see his older siblings eat and get so frustrated with his inability. None of us understood why he wouldn’t/couldn’t eat. When we learned about NoTube we were shocked that there was a program out there that made tube weaning seem so possible! We were always under the impression that he would have to start to eat on his own before trying any kind of wean. Our lives were totally controlled with our son’s feeding schedule and anxiety over his non eating.
In just a matter of a few conversations we knew we had made the right choice. To hear a group of professionals say that you have every right to want your child to eat was so refreshing. To hear that there was no reason that he shouldn’t be able to eat was amazing. And to be given concise easy to follow instructions was just what we needed. When the fear would set in, the NoTube team would squash them immediately. Essentially we were treated like normal human beings instead of a family dealing with a medical condition. It was very empowering to be able to make decisions like a normal mother would.
The biggest and best change we have experienced since the wean is Bennet’s attitude. Within days he started acting more HAPPY. He had always been uncomfortable and overfed, but we didn’t know how to help him. Once he had the power over how he felt and what he was putting in his stomach his attitude changed immediately. He was proud of himself and we could tell we had given him the best gift we could have ever offered him. The entire family is functioning on a more normal level, with less anxiety and more enjoyment of one another.