one of the main reasons for starting this blog was to raise awareness of cystic fibrosis.. when Stanley was born me and jack knew of the condition but not to the extent that we obviously know about it now, it seems to be one of those things that so many have heard of yet don’t know what it actually is, over the last four months we have had lots of questions from people some we know others we don’t, and questions are fine (although we’re sure a few didn’t think before speaking?!) we are more than happy to explain to people what CF is, what it affects and what it means for Stanley, feel free to ask us what you like, much better to ask than to pretend you know!
so we thought that we would share a few of the comments we’ve had over the past few months.. (this is is no way meant to be offensive to anyone!!)
“He looks fine”
Thank you! he does look fine In fact he looks like a normal five month old little perfect baby boy. It’s not always what you can see though. for Stanley to have gone out in the day means that before we have even left the house, we have done several rounds of physio therapy, 14 doses of medications, tube feeds, enzymes before every feed that he has just so he can digest the contents of what he’s taking in. he is normal but all of these things need to be done each day in order for him to do day to day things people take for granted.
” oh there’s different types of it he can grow out of it can’t he”
we wish. Currently cystic fibrosis is a incurable life limiting condition. putting it bluntly there is no magic fix, it’s a progressive condition. The things we do each day are preventatives to stop CF taking its grip so quickly.
“That’s just like my child.. he/she suffers from…”
This one we have heard so many times now and in all honesty it’s the one that grinds on us the most – As much as we feel for any parent when there child is poorly, Having a cold, having reflux or being in hospital to have your tonsils out is NOT the same in any way shape or form. Of course it’s awful to see any child poorly but please think before you speak a cold to our child is two weeks in hospital please count yourselves lucky.
“That’s that thing where you hit there backs isn’t it”
..and that’s pretty much what people seem to think CF is. Percussion physio is a type of treatment and we do use it from time to time should Stanley be very poorly and unable to cope with his mask several times a day, however things have moved on so much in the past few years and now there are lots of other ways of doing physio, Stanley mainly uses his PEP resistance mask! It really does show how outdated the information people think they know about CF is.
“Atleast when you’ve done treatments that’s it”
Wouldn’t that be nice, some days it just doesn’t work like that though throw a few germs into the mix and you can pretty much guarantee it will double if not triple what we have to do in terms of medicines and physio each day, and medicines and feeds don’t just prepare themselves all syringes have to be made up for the day and sterilised again when used same for bottles only to make up a bottle it takes over 10 scoops of different things just to make up one bottle in order for Stanley to get the calories he needs to gain weight properly. Our days consist of not sitting down most of the time and getting everything done not just the CF treatments, some days are more laid back but then you make up for it later on in the day when you have a mountain of things to wash and sterilise your still doing your third lot of physio at 10pm and your lucky if you go to sleep before midnight when you know you’ll be up again at 3am setting up another feed (usually watching Jeremy Kyle that’s been on the morning before haha!) but it’s not just that, it’s also general day to day things and looking after two little boys that need our attention not just medical attention, some days it’s a case of not being able to move for an hour at a time because you have a poorly baby who won’t sleep without being held because it’s the only thing to help him to stop coughing and allow him to have a proper sleep, changing a feeding tube for the fifth time that day because he’s coughed so much it’s made him sick and push the tube out, with Alfie spending 30 minutes trying to persuade him that changing his Gastrostomy tube won’t hurt him even though he knows exactly how it feels. Setting up feeding pumps for two boys seven times day between them. Waking up in the middle of the night when one of them is bleeping, changing sheets for the third time because the covered in sick again.changing stanleys tenth nappy of the day and the clothes he’s wearing too and having a nappy for every colour of the rainbow (poo is a big thing in CF don’t you know?! You defiantly know when it time to up the enzymes!) Walking around the room with baby in one hand and a mask in the other bouncing up and down for 15 minutes without stopping just to try and get physio done, days that run smoothly are lovely but they are few and far between, things don’t always go to plan and although we have a routine no two days are the same and some days it’s just impossible to stick to times on everything although the one thing I can say is we do always get what we need to get done for the boys. Some other things just have to wait -It all falls in to place somehow, it’s our normal ❤️
“I know someone who had that, they had a lung transplant and now there fine”
Ahhh! a lung transplant does NOT cure cystic fibrosis, it buys you time and for those who have one how amazing is it to have some time where they can breathe easier and have a life, but it doesn’t stop the CF,it doesn’t stop the need for medications. You don’t have a new set of lungs and everything is ok. Lung transplants are a massive risk in themselves.
“My baby had one of those tubes for a few days when he was in hospital”
It’s amazing how many people stare and talk amongst themselves when they see a tube, (we can hear you!) this is really when I would prefer for people to come up to us and ask what it’s for – the look on people’s faces when you tell them Alfie has had one for six years and Stanley’s now had his for around 3 months. They are there for a reason, they need to be fed it’s really that simple – it’s a tube no need to look at him like he’s an Alien 👽👶🏼
“A few germs never did my kids any harm”
It’s amazing how many people go to reach into a babies pram without asking, I never noticed it with Alfie because it all honesty I’ve done it myself, it’s a natural thing to do to go to hold a babies hand when talking to them. But now it’s defiantly something I think people should ask to do. A few germs to Stanley is nebulisers, six months of antibiotics, long lines, Iv drugs, stays in hospital in isolation, a few bugs CAN do him harm, a simple holding of the hand or someone picking him up without cleaning there hands can cause him to be so poorly and it’s just not worth it – before coming near him please wash your hands, without sounding rude we don’t know where you have been!
“Can you catch it”
Nope strangely enough you can’t just pick up a genetic condition in which both parents have to pass on a faulty gene. 1 in 25 people in the U.K. Are carriers of the gene, the chances of two people meeting and having a child with the condition is even rarer and when you both carry the gene there’s a 1 in 4 chance that the child will be born with CF. Cystic fibrosis is classed as the most common life limiting genetic condition in the U.K. However it’s really misleading to use the term common, although it IS one of the most common genetic conditions I did ask the question of how many people in Leicester on average are diagnosed in a year and it’s around 3 children.. just THREE so although the most common it’s still so rare.
There’s still a lot to be done in order to bring people up to date with exactly what cystic fibrosis is and what it means, hopefully one day in the near future it will be something that’s talked about more often and something that more people will be aware of! – but for now keep asking questions! ( as long as you think before you speak! 😉)