Tom

Tom is a young fighter, who regained his carefree spirit with the help of his family!

Tom is a small but incredibly strong boy. The feeding tube was initially essential after surgery, but over time it became more and more of a limitation. The numerous side effects Tom experienced, along with his parents’ constant worry and preoccupation with tube feeding, now belong to the past. Through the Netcoaching program, he made great progress and learned to eat on his own, which quickly made the feeding tube unnecessary. Today, he’s enjoying his life without various tubes. The entire team is very proud of Tom and his amazing progress!

Tell us about your experience with your child’s mealtime situation (with or without a feeding tube). What was it like before, during, and after treatment? How did you feel during the program? What was difficult; what was easy? What kind of changes did you notice in your child? Share what is important to you with other parents…:  

The situation before treatment (experience with dietary needs):

Before the program, our daily life was marked by extreme stress. After our son Tom’s heart surgery, the nasogastric tube was a lifesaver at first, but at home it quickly became our biggest prison. Due to excessive tube feeding at the hospital, Tom suffered from severe reflux and was constantly vomiting. For over 12 hours a day, we were occupied solely with tube feeding and dealing with the aftermath of his vomiting. A carefree baby’s life—or even just playing on the play mat—was impossible, since any time he was on his stomach immediately resulted in vomiting. At the same time, as a family, we had to walk a tightrope to ensure that Tom’s healthy twin brother was never neglected in our daily lives. We were at our physical and mental limits.

During treatment (feelings, challenges, and relief):

The absolute turning point came on November 26, 2025, when Tom pulled out his feeding tube for the umpteenth time, and—with the approval of our cardiologists and the NoTube team of experts—we decided: We’ll leave it out and start the trial phase. Throughout this process, we were always supported by NoTube’s online coaching from home.

What was difficult? The beginning was incredibly bumpy. The constant tension and fear about whether he was getting enough calories ran deep. In addition, the program was an enormous financial hurdle for us as a family, 80% of which we were only able to cover thanks to a private GoFundMe campaign.

What was easy or helpful? The feeling of getting through the tube weaning process in the safe, familiar environment of our home and knowing we had close, professional support from Netcoaching by our side. That gave us the confidence we needed to keep going.

After Treatment & Changes in Our Child:

Tom even managed to get through two severe infections during the weaning phase completely without a feeding tube, until we finally received the official “Weaned” confirmation from NoTube in writing. Thanks to the program, Tom has regained his complete carefree spirit. He’s thriving on his play mat and is finally smiling at us without any tubes in his face. Even though he still needs a special formula to get enough calories for his heart, he’s finally drinking on his own terms and is even slowly starting to eat solid foods. We have our free child back.

What’s close to my heart for other parents:

To all the tube-feeding moms and dads out there who are stuck in this vicious cycle of overfeeding, vomiting, and constant anxiety: You’re not alone, and there is a way out! Be brave, trust your children, and seek help—like Netcoaching.

The struggle is infinitely worth it when, in the end, you look into the face of a tube-free, happy child.

Do you have any questions? Please contact us!