Weaning a baby with cystic fibrosis 🍽

This little man loves his food 😋

People are often surprised that weaning a baby with CF is not drastically different to weaning a baby without CF. There’s a few differences that I’ve outlined below but otherwise you can crack on - and enjoy it!☺️

Enzymes - As Arlo is pancreatic insufficient, enzymes need to be given with every meal that includes protein and fat. This sometimes feels a bit like hard work as you have to calculate/‘guesstimate’ how much fat and protein is in the foods you are giving and therefore how much creon (digestive enzymes) to give. But I’ve been told it’s more of an art than a science and will get easier as we go. And mostly I am just grateful those little granules help him digest his food properly.🙏

Salt - In this respect I suppose weaning a baby with CF is easier because you don’t need to stress so much about salt intake. With most babies it can be really hard to keep under the recommended daily salt intake but we’ve been told by Arlo’s dietician that we don’t need to be so concerned about salt intake for our little ‘salty CF bae’. Let me explain why: CF is caused by a faulty gene that controls the movement of salt and water into and out of cells. This has a huge number of repercussions around the body (the build up of lots of mucus causing lots of issues!) but it also means that people with CF often sweat more than people without the condition and their sweat contains higher levels of salt. This means that people with CF tend to lose more salt and are likely to need additional salt supplements at certain times or when the weather is particularly hot. I know in other parts of the world babies are given salt supplements right away but here in the UK Arlo’s team are currently telling us that we just don’t need to worry so much about salt content in meals - so if we cook a homemade meal for the family, we don’t need to ciphen off a portion for Arlo with different seasoning 🧂

Fat and extra calories: Right now Arlo’s weight gain is perfect 👌 and for the time being we don’t really need to worry about proactively trying to get extra calories in him. But for a lot of people with CF (and likely for Arlo when he is older) they need extra fat and calories - there’s a few reasons for this including the fact that people with CF require more energy to breathe normally, fight lung infections and compensate for poor digestion. And whilst the digestive enzymes do help with the latter, they still only result in around 80% of food being digested, so any extra fat and calories will only be a good thing. This means that if you have a little food monster like Arlo who will eat anything you put in front of him (except weetabix - he did NOT have time for that!) then you needn’t worry about him gobbling up half an avocado or absolutely pigging out on mac’n’cheese 🥑🧀

I just hope this guy continues to love his food and keeps gaining weight and strength 💪💪💪