baby · cysticfibrosis · journal · mum · mummy · parent

Cystic Fibrosis – Fletcher’s Shock Diagnosis.

Some of you may already be aware from my social media post, we found out recently that Fletcher has been diagnosed with Cystic Fibrosis. I would like to write updates along the way of Fletcher’s experience with the condition to educate those out there (like us) who aren’t familiar with the condition; right from the start to show his journey through the good times and bad. Writing also helps to express my feelings about things in the best way for me. I hope it will help me to come to terms with his condition as at present I could cry at the thought of it in any moment.

We first found out from our health visitor that “something” had come up in his heel prick test that needed further investigation, at the children’s hospital the following day- she didn’t elaborate what so ever. In fact she was very apologetic about giving us “the news” (hardly any news at all) which made us feel a bit uneasy. We did what any millennial would do – googled it. We didn’t even realise what a heel prick test was for and so when we read that it was to test for 9 rare conditions this frightened us even more so. We were clutching at the hope that it was just going to end up being a false positive for whatever this “something” was that they wanted to investigate – as supposedly its common to get a false positive (according to the internet). We put it to the back of our mind completely for the rest of the day and carried on as normal.

When we went in to the children’s hospital we began to feel nervous again. As you walk through the building and see poorly children it’s enough to scare anyone. Although, these children all seem very happy and are extremely brave to be going through whatever they may suffer with. The waiting room was full of bright colours and plenty of toys (being regularly cleaned with antibacterial wipes – top cleaner, she was very thorough!) We knew we were waiting for Fletcher to have a sweat test, again, completely unaware of what this meant and what they were looking for.

When we were called into the room and made to sit down… this is when it began to dawn on me that we were about to be told bad news. I could feel it coming from the minute the health visitor told us the day before anyway, but this was very much the moment of truth. The consultant basically asked us how Fletcher has been and how my pregnancy was, he was looking at us with sympathy in his eyes already and I just wanted him to spit it out. I told him how perfect our little boy was, no issues so far just a little trouble trying to wind him after a feed. No complications throughout pregnancy either. Our baby was putting on weight (as far as we were aware from his last weighing about 2 weeks ago) and feeding well, producing the poops and wet nappies as he should be. The consultant then began to say “So there has been a condition detected in Fletcher’s heel prick test, has the health visitor explained at all which condition we are investigating today?” Uhh… nope. “We have results that Fletcher has the genes which would mean he has cystic fibrosis.” Now… this isn’t exactly word for word how he said it but it’s pretty much how I remember it. Pretty quick to the point. In this moment, my heart just sank into my stomach. I couldn’t even BARE to look at Scott because I knew it would make me cry immediately. I composed myself to allow the consultant to further explain what this meant. He explained how both myself and Scott are a carrier of a gene for cystic fibrosis and because of this, we both gave it to Fletcher meaning he has 2 genes – this results in him completely having the condition. Whereas myself and Scott just simply carrying one gene, doesn’t affect us in the slightest. There is a 1 in 25 chance of carrying the gene, and me and Scott both carrying it meant that there was a 1 in 4 chance of us having a child with cystic fibrosis.

The consultant was telling us a lot of information but in a slow and sympathetic way that basically just made the whole situation feel like the end of the world. He kept pausing after each sentence and just staring at us with sorrow all over his face and this was what I found made me feel most emotional. I felt like saying “come on mate just spit it out I can’t bare the tension!” but instead I couldn’t speak. I just broke down. Being completely clueless about what cystic fibrosis actually meant was what made it the hardest, as I guess I just didn’t know what this meant for my little baby! Was he going to die? Was he going to live a normal life? Will he be in pain a lot? What does it mean?! They explained to us that they hoped Fletcher has a mild case of CF due to the genes that he inherited from us. Meaning that he wouldn’t be as severe as other’s may be.

So far as we are aware, (we are still learning for ourselves at the moment) CF is basically where someone has thicker and more mucus on their lungs and in their system in general. Some may even suffer with digestive problems, meaning they need to take enzymes to help them digest food properly as they aren’t able to do so themselves. Luckily for Fletch, he has been gaining weight VERY well (little fatty) and so they believe that he is fine in this case and so may not need enzymes because he is able to digest food perfectly fine. We have a 3 week wait to confirm this from his poo sample – charming! They believe that Fletcher will need antibiotics to help him. Due to having the excess, thick mucus on his lungs he basically picks up and suffers with infections/virus’ more so than the average person. Each time he gets ill it can cause further damage to his lungs which can then result in a lung transplant for some cases of CF. He may have a cough more often and this may just be uncomfortable/irritating for him…and those around him! (sorry to his future school peers and exam adjudicators) When Fletcher gets a cough, cold or an infection of some kind, we will have to immediately inform our support nurse and get antibiotics for him as soon as possible. Even things like chicken pox will be more dangerous to him as this is a virus. As I said, we are still learning at the moment and so we don’t truly know how poorly he may get, but we will know what we can do to prevent it as much as possible.

Fletcher had to have his sweat test, mainly just to confirm for certain that he does have cystic fibrosis. It also helps them to know how severely he has it. They couldn’t get a very successful sample due to him having such a dinky arm – however their result came back positive still (which we weren’t expecting any different as the genetic screening – heel prick test – is pretty certain anyway). The sample also came back slightly higher than they were expecting, which means that it might not be as mild as they originally thought. However, they’d like to re-test his sweat when he’s a bit bigger just to confirm the results clearer. (Not sure it will mean anything any different to where we stand with it now anyway) Fletcher will get poorly – there’s nothing we can do about that. What we are being told though is that there are preventative measures we can make to help keep the infections at bay.

STAGNANT WATER – They explained how stagnant water can be a risk due to the mould/spores that can grow in this. So rubber ducks (they can hold old water inside which gets mouldy – it’s gross), dirty/wet leaves, Jacuzzi’s, etc.. are things Fletcher must avoid so that he doesn’t get ill. Fletcher’s future nursery/school will need to be aware of this so that if they take them out on field trips or when they are playing, the teachers can be extra careful that Fletch doesn’t come in contact with these sort of things during activities. Ensuring that he and those around him are washing their hands often so that they don’t pass infections onto him. He also has to be cautious around hay/straw due to spores in this – so we have to be extra clean with our rabbits and ensure that he doesn’t come in contact with the litter tray or their hay. So I’ve majorly deep cleaned our bathroom. as we were starting to get the typical bathroom mould spores around our taps in the bath and it was making me paranoid. I’m going to be so OCD with cleanliness now!

COUGHS/COLDS – Fletch will have to stay away from people who are ill. Obviously it cannot be avoided if it is myself or Scott. But other’s will have to wait until their illness has cleared before thinking of visiting him. Lots of hand washing will be the key thing to ensure myself or Scott don’t pass any infections onto him. If anyone in his class when he is at school is ill, Fletch will have to actively avoid them. Not sitting by them and as always, general hygiene will always help.

CROSS INFECTION – Fletch will not be able to come into close proximity of others who suffer with CF. Due to the risk of cross infection. If someone with CF is carrying an infection, they could pass this on to someone else with CF easily. Someone with CF may seem well in themselves but may carry a bug inside which could still infect another. If myself and Scott were to have another child that unfortunately again suffered with CF (we have a 1 in 4 chance of this happening) then there’s not a lot we can do about it, we’d just have to deal with a lot more illness between the two of them. They wouldn’t be able to give each other a kiss and they wouldn’t be able to sleep in the same room.

FERTILITY – Fletcher unfortunately will have difficulty having children naturally because of CF. Basically because of the excess mucus in his system he will have blockages that will mean his sperm cannot get through like normal men. (He will perform just the same as normal men and function as normal…not like this is our interest at all as his parents… my son is my baby and I don’t want to think about his sex life quite yet haha!) He will have sperm that are fine, and therefore he will hopefully be able to have children via IVF if he wished to.

SMOKING – I’m not expecting my baby to necessarily pick up a cigarette and start smoking at a young age but we have to be cautious of second hand smoke. So we have to keep him away from smokers at social events etc. We also believe that BBQ and bonfire smoke is a risk to his lungs so we have to be cautious of this too.

These are the main concerns at present. As the years go on there may be worries that arise which we may not have been aware of. But we’re not entirely sure how he will be until he faces infections for himself really. His first few winters will be the important ones to ensure he is well protected as he will be very vulnerable. Keeping him away from the risks is our best way to prevent him from getting poorly. As the days have gone by since we first found out his diagnosis, we’ve come to terms with it and we know its completely manageable. We often frighten ourselves when we stupidly read stuff online, such as the life expectancy for someone with CF is 47. How eventually, due to all the infections damaging the lungs, people end up needing a lung transplant. There are various case studies on the internet about people who have CF and when you read them it can just make you so afraid of what we have yet to come. However, every time we speak to the nurses we have supporting us, they immediately put our minds at ease about it all. We just have to take each day as it comes. He may not even get an infection for a little while, he may handle it well or it may make him very poorly… we just don’t know. But this is the thing, it’s still very much the fear of the unknown for us at the moment.

One of the biggest things we have to do is ensure to keep up with his physiotherapy, which we’re being taught on Wednesday. As he grows up we have to ensure he is exercising regularly. Poor lad won’t be able to be a lazy slob on an Xbox. They recommend getting a trampoline, getting him into a sport, and just generally getting him running around. The exercise basically helps to reduce the mucus in his lungs. Guess I’ll have to get active myself now then… thanks Fletcher, Mummy likes being a lazy slob!

Despite everything, our little man is doing really well. He’s putting on weight, feeding well, sleeping well. I couldn’t ask for a more perfect little baby. He loves a cuddle and I love giving them! How can I resist this little cutie?!

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4 thoughts on “Cystic Fibrosis – Fletcher’s Shock Diagnosis.

  1. What an eloquently informative blog…and what a wonderful mum and dad you are to Fletcher..it must be so worrying to learn your baby is poorly, but you seem to have educated yourselves really well, forearmed os forewarned as they say…Fletcher is a lucky little fella with the most gorgeous smile…good luck with his progress and I look forward to reading about his blooming health.😘😘

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  2. Lacey …that is beautifully and bravely written. Fletcher is a lucky boy to have you and Scott as his mummy and daddy xx

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  3. Just read your blog Lacey. You and Scott are doing a wonderful job. Fletcher is very lucky to have such a wonderful Mummy & Daddy. Your gorgeous little boy will get all rh live and care he needs. What you are doing and have written is testament to the wonderful Mummy you are. I will look forward to reading Fletchers progress and watching him grow. Nanny Paula has a very special grandson xx

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