Day 2 - Have pump will party!
David’s a real charmer and loves meeting people.
Hello, I’m Evelyn, I’m sharing our story as I believe raising awareness is fundamental to more people knowing about home artificial nutrition (HAN) and those who need it.
My son David is 12 years old and he is enterally fed due to complications at birth. David has cerebral palsy. He has an unsafe swallow and will never be able to eat.
When he was born David was cared for in the Special Care Baby Unit (SCBU) in the Royal Alexandra Hospital (RAH) in Paisley, Scotland. At the very start David’s tongue seemed to be very high up in his mouth and he showed no interest in feeding. He obviously had to be fed and naso-gastric (NG) feeding was the solution. David was in SCBU for 6 weeks and during that time we were trained to pass an NG tube and how to do bolus feeds. We tried to encourage him to use his tongue and gave him tasters, however, slowly but surely, we realised that enteral feeding was going to be the norm. After NG feeding for 9 months we decided that it would be better for David and for us if we opted for PEG feeding.
David is under the care of the RAH and went to Yorkhill in Glasgow for any operations related to feeding.
We would love it if we could watch David tuck in to his dinner but that’s not going to happen. Instead we can rely on the feeds he gets being nutritionally sound and allowing him to thrive. One big benefit of the way that David is fed is that it can happen pretty much wherever we are and whatever we are doing. We have set up feeds in planes, trains and automobiles!, in the cinema, at the shops, in a castle, etc, etc. David’s feeding regime doesn’t hold him back and is, in our eyes, a normal way to be fed. Some people find it odd and stare. David is unaware of this but we sometimes find it uncomfortable. Rather than stare at us we’d much rather that people asked us questions about how David is being fed. Raising awareness of HAN can only be a good thing from that point of view.
To know David is to love him. He’s a real charmer and loves meeting people. The photo attached is of David at his Primary 7 prom. He was so excited to go and loved taking part in the disco. His feed was started while he was at the prom and being able to do this meant that he could go to the prom and have lots of fun. In his own way he is doing his wee bit to raise awareness and understanding of disability within our local community. Hopefully, people will see that whilst David has cerebral palsy and can’t sit up, stand, walk, talk or eat... he is still thriving and happy. If we didn’t have HAN that wouldn’t be the case. David’s feeding regime doesn’t hold him back and that’s exactly how it should be.