My baby was experiencing strider (gasping during and after feeds) and was advised to go to a&e royal infirmary Edinburgh. He has suspected treacher Collins syndrome of which we are in the process of understanding his associated health conditions.
His weight was taken along with other testing, which highlighted he had not increased weight in a week. It was suspected that because of his underdeveloped jaw (TCS associated) his tongue was set too far back making feeding exhausting for him. His nasal passage is also narrow, making breathing difficult.
He also tested positive for a UTI so this is was getting treated via iv.
I was seen my various different specialisms: ENT, respiratory, genetics, cardiology, breastfeeding support.
We spent 7 nights in Castle Mey ward. I was frustrated to find out my meals would not be provided despite the fact that I was breastfeeding my son, making me rely on family to bring food (not helpful that the hospital shops are quite expensive). My opinion is that because I am ultimately providing nutrients to my son via breastfeeding I should be fed during our stay. As my baby is still young he was cluster feeding so it was very difficult for me to leave the room.
"Frustrated that meals not provided when breastfeeding"
About: Royal Hospital for Children and Young People (Edinburgh) / Castle Mey Ward Royal Hospital for Children and Young People (Edinburgh) Castle Mey Ward Edinburgh EH16 4TJ
Posted by sigmapw35 (as ),
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