Day 3 - Ryan

Intravenous Patient

Ryan is 18 and lives in Cramlington in the North East of England. His medical journey began at birth when he was born with a rare congenital condition called tracheo-oesphageal fistula (ToF) long gap, which is where the end of the oesophagus enters the stomach and is joined to the trachea (windpipe).

He also has a bowel disease which after many surgeries has resulted in short bowel syndrome. After a total gastrectomy (the surgical removal of the entire stomach) it has resulted in absorption problems and dumping syndrome.

From birth until the age of eleven, Ryan was fed with a variety of partially digested milk feeds, but it was clear that this was not working. He was eleven years old, weighed a tiny 17 kilos and wore age 3-4 years clothing. The doctors suggested that he would be better off being on Total Parenteral Nutrition (TPN).

Seven years later he is still on TPN for 14 hours a day, seven days a week. It is difficult to get used to but it has been so worthwhile. He is 5'6" and now weighs just under 40 kilos (a huge improvement) and has so much more energy and vitality than ever.

He has even been away on holiday to Florida with Dream Flights and was granted a "wish" by the 'make a wish' foundation. He chose to be the Newcastle United football manager for the day and thoroughly enjoyed himself.

My one wish: As Ryan is now 18 years old he is moving into the adult services and it is a worrying time for all of us after having spent so long under the excellent care of the paediatric team at the Royal Victoria Infirmary in Newcastle. It would be a great comfort to feel more reassured and supported throughout the transition period from both the adult and paediatric side.

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