Henry is seven and loves life!
He was a very sick little boy when he was born, weighing just 630g, twelve weeks before his due date. He needed a huge amount of intensive care, and was on oxygen therapy at home until he was two years old. All this led him to develop a condition called ‘oral aversion’ which meant that feeding was very frightening for him. He hated bottle and breast feeding and he rejected solid feeding when the time came and by one year of age had a percutaneous endoscopic gastrostomy (PEG). This made life easier but was not a long term solution for a little boy. At aged three we brought him to Graz in Austria; this unit has developed a multidisciplinary programme that focuses on weaning tube fed children and after that he slowly began to drink and eat. This was a really positive development and the PEG was removed when he was four. Since then he has had a very limited diet and appetite, however, and by the age of six he was far smaller and lighter than a busy boy of his age should be. His medical teams were concerned that this 'undernourishment' could have a long term effect on his ultimate height. Therefore we all made the difficult decision to have the PEG put back in for supplementary nutrition. It doesn’t bother Henry though, he still cycles, climbs trees, rides his scooter and swims – and it has already made a big difference to both his height and weight. We’ll continue with it at the moment, until Henry begins to eat and drink far more himself.
The decision to restart enteral nutrition has been a positive one for us, and hopefully will have a long term beneficial effect for Henry and his health in adulthood. Our medical team has been very helpful, and the nutrition support nurses are easily accessible and a mine of information.
My one wish: Health funding in Ireland for this is difficult for patients above a certain income level. While a monthly charge of just over £100 covers his milk and other drug requirements; all the necessary dressings, tapes, etc. have to be purchased at an additional (not inconsiderable) cost. People with other medical conditions (e.g. diabetes, epilepsy) receive a long-term illness card to cover their health costs, and this should also apply for people on enteral and parenteral nutrition to ensure that patients do not compromise their care (e.g. not change a dressing when needed) because of concerns about cost.
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