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School days and new beginnings: Navigating life with home parenteral nutrition

A lesson in empathy and understanding

Starting school is a big step for any child, but for those with special medical needs, it often comes with additional challenges. Leo, the young son of one of our colleagues, is one such child. Having relied on parenteral nutrition since his birth, he and his family have already overcome many obstacles in everyday life. Especially in new environments, people may not be aware of the complexities they have to deal with daily.

When Leo started elementary school this year, his family prepared for the unique aspects of his condition that would need to be managed in the new setting. Leo uses a wheeled suitcase instead of a backpack as the catheter, placed between his chest and shoulder, makes wearing a traditional backpack too risky. Without the suitcase, he would have to carry a backpack with his hands all day long. 

starting school with parenteral nutrition

On his first day at school, Leo bravely shared his story using his cuddly toy with a simulated medical setup to explain how his parenteral nutrition works. His toy monkey had a small plaster on its upper body with a demo catheter attached, showing the same position where Leo’s catheter is placed. This child-friendly demonstration helped his classmates understand the process of receiving intravenous nutrition while allowing Leo to maintain his privacy. Thanks to this explanation, his classmates and teacher now better understand, support him, and are mindful of his catheter.

Leo's story shows us how important it is to educate others and the courage it takes to continuously adapt to new environments. While his condition requires a bit more planning in many areas like school sports or class trips, and needing a personal assistant at school, Leo confidently navigates his new school life. His classmates and teachers can develop an understanding and learn along the way. After all, that's what school is all about. His story also reminds us that every child, regardless of their medical condition, deserves the opportunity to thrive.