Freya is two years old and was born with tufting enteropathy, a rare genetic disorder where the lining of the gut ‘tufts out’ preventing absorption and causing profuse diarrhoea.
At first we didn’t suspect that there was a problem but after the first ten weeks her weight gain had stopped and we became concerned. The local hospital tried a number of different enteral formulas via a naso gastric (NG) tube but this didn’t help and they decided the best cause of action was to transfer her to Addenbrooke’s hospital where they started her on total parenteral nutrition (TPN). It was a difficult time but we knew that it was the best thing for Freya.
Five and a half months later we returned home after being showed how to administer the feed ourselves and she is now on 900ml of TPN a night, six nights a week. The NG tube has now been removed as she is able to manage a small amount of liquid from a bottle and although she does chew on food, she rarely swallows it as it causes her to vomit.
PN has meant that Freya has thrived and is a happy and healthy looking child. Although a little small for her age, there are no obvious signs of developmental issues; in fact she seems very bright and has a joyful personality.
My one wish: When all this began we wanted to meet with other parents who have a child with tufting enteropathy as we believed it could help us come to terms with everything. This proved difficult and took a long time; thankfully PINNT has helped with this.
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