Adam was born in 2016, a healthy 7lb 2oz, by day 5 he was 6lb 6oz. I was assured a weight loss was normal, but being my 3rd baby and neither of my previous babies losing weight this was unusual to me. Over the next week more weight fell off and his nappies were becoming more smelly (enough to clear a room). Again, I just thought he was a smelly baby - he’s a boy after all!
So roll on 3 weeks old in January 2017. A day I will remember in clear detail for the rest of my life - diagnosis day. I was with a group of friends and the phone rang, they told me to get my partner home from work and to meet them at the hospital where they would be waiting for my son.
They wouldn’t tell me over the phone and my partner worked 90 minutes away.
So 2 hours later we arrived, the results of Adam's heel prick test showed high IRT levels, which they then sent for DNA analysis. Two faulty genes which meant my son has cystic fibrosis.
From that day, we started treatments. Adam does breathing treatments when he wakes up in the morning and before he goes to bed at night. If he is sick we do extra at lunchtime and/or during the night.
Adam has to avoid people with coughs and colds, because his body produces more thicker mucus and this causes damage to the lungs.
Because of the thick mucus Adam's pancreas does not work, everytime he eats drinks or consumes anything he has to take digestive enzymes. These are in capsule form and there is no liquid alternative. When he was a baby we’d break these capsules up but he has been able to take full capsules since he was 12 months old. He is now 2 and a half and can take 8 capsules in one go - not really something a parent gets excited about but we do! Impressive!
We spend a lot of time in and around the hospital and we have a great team there! We avoid a few things that could be dangerous for Adam ie. sick people, stagnant water and others with CF.
Aside from Adam's sister, he cannot meet another person with CF for the risk of cross contamination. If he decides to make CF friends they will have to be virtual and online. They cannot come into contact.
Adam also has social communication disorder. He does not speak so verbal communication is hard for Adam. He has however learned to show his feelings in other ways, he is able to use PECS and other forms of sign language.