Aidan is from the UK. At the age of six months, he started Netcoaching at NoTube. He was born with a genetic syndrome.
Due to his complex medical history and because of an insufficient oral intake, an NG tube had to be placed when he was only two weeks old. Due to his long-term tube feeding, he developed a tube dependency resulting in frequent recurrent retching & gagging and vomiting and developed an oral aversion. He also suffered from severe reflux. During the Netcoaching, he made rapid and good oral progress, learned to accept his baby bottle again and increased his oral intake of baby puree. He was finally successfully weaned off his NG-feeding tube after only nine days.

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…:

Aidan was sent home from the hospital after his first cardiac surgery at only two weeks old with an NG-tube. The tube caused Aidan severe discomfort in the form of reflux and constant vomiting from overfeeding. We were unable to feed Aidan outside of our home due to the obvious discomfort the tube caused him and inevitable vomiting that would occur after each feed. Whilst Aidan tried to feed from a bottle between his first and second cardiac surgery, he started to blatantly refuse any oral feeding after his second surgery, which was when his heart was repaired and he had the capacity to sustain himself from a cardiac perspective. This was when we approached NoTube and initiated their Netcoaching programme.

When the programme started we were excited and anxious, but within just a few days Aidan started taking a bottle and eating purees. After only a couple of weeks of tube feeds supplementing his oral feeding, the tube feeds were ceased and the tube removed. Aidan's father and I were very sceptical that Aidan would be able to sustain himself without the tube, but he proved us wrong! Every day that we felt fear and panic because we thought Aidan wasn't eating and drinking enough, he always seemed to come through. Slowly, he started showing more signs of hunger and very gradually increased his intake.

The NoTube team were incredibly supportive throughout the process. Every day (usually multiple times) we wanted to talk to them, ask them questions, have them provide guidance, reassurance and review videos of Aidan. They were happy to do all of this and were incredibly responsive.

Half way through the wean we took Aidan to visit his family in Canada, and NoTube stuck by us the entire way. They extended our ticket to ensure we were supported on our way home and then extended it further when they heard that we were experiencing challenges from Aidan's medical team at home.

Gratitude cannot adequately describe the positive feelings of thanks we have for the NoTube team. Unfortunately, in the UK, the NHS does not recognise tube dependence or offer any concrete solutions to this problem. NoTube gave us the structure, guidance, advice and continual support we needed to achieve our dream of watching our son eat and drink on his own, without the need of a tube.

Our lives are more 'normal' now. Aidan can eat and drink out of the home with friends and family. His development has skyrocketed since the tube was removed and he's been an incredibly joyous little baby boy.

Thank you, NoTube!

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