Being A Parent Of A Cystic Fibrosis Baby

Ahead of Cystic Fibrosis Week, I would like to write about our experience finding out Fletcher has Cystic Fibrosis. What we learnt within the first 2 months and how we accepted it into our family. I will also share my tips and tricks that we follow in our household and what we try to avoid.

First Thoughts

There’s no worse feeling than to be told by a professional that your child is poorly. That your brand new little baby has a genetic condition that can be life limiting. You’re life suddenly gets flipped on its head and you begin to wonder what the future will bring. I cannot begin to describe that moment in the hospital when we were told the news. I’m going to be totally honest and say I had no idea what the condition even was before that day! So initially, fear was all that came over us. The first few days consisted of a lot of questions and a lot of tears shed, due to the fear of the unknown. We’d often look at our baby and think, our poor child, he’s not well and it’s our fault. Will we out live him? Will he suffer? We spent the first few days questioning a lot!

Cystic Fibrosis Trust

We were told by our CF nurse about the Cystic Fibrosis Trust website. Which has been our best source of information about the condition. We scrolled endlessly through the website, discovering all there is to know about CF, but the page that helped us the most at first was the ‘New Diagnosis’ page. There’s a short film there about a little girl with CF and how her parents coped with the new diagnosis. This little clip brought us to tears in such a positive way, as we were so frightened of the future, but this video brought us hope. We also signed up for a New Parent Pack, this further helped us become more aware of the condition and opened us up to completely different feelings about the diagnosis. It provides little cards that you can hand out to family and friends if you’re struggling to talk about it, or explain it, which will tell them what they need to know about CF. But mainly, it’s full of great stories to help parents understand what the future holds. We also read a lot on the ‘What is CF’ page, which gives visual explanations with various videos to show the different ways CF can affect the body. When you’re told on the day of diagnosis by a professional, it can be initially quite difficult to take in; especially when you have never heard of the condition before, or you have very minimal knowledge of it. So give yourself the time together as parents or as a family, to sit down and research through this site. You can learn all there is to know about CF in your own time. This was definitely the best source of information about cystic fibrosis and was the main thing that helped us to accept Fletcher’s condition in a positive way.

Top Tips

• Write a list of questions: as silly as it sounds, we were told by our nurses to think of a few questions to ask them at our next home visit. Boy, did we think of a few… we actually wrote a page full of them! We were sat at home thinking up all these things but we’d forget them before we’d see the nurses and so we decided to just write them all down, regardless of how silly they sounded. It would only bother us if we didn’t ask. This helped us a lot, because almost every question was answered with the least worrying response. We realised we’d over thought it and we really had nothing to panic about.
• Don’t be afraid: ask your CF team anything! I’m still only just learning this now for myself. As a first time parent, I already don’t know what to expect with a newborn baby. Now that he has this condition, I worry about everything twice as much! The CF nurses are a fantastic support and they will answer anything, and even look at those gross poop pictures that you took on your phone! #GuiltyAsCharged
• Don’t trust everything you read: our CF nurse had told us not to scare ourselves by googling too much. She said that a lot of information you read online is outdated and research has since progressed. There are some extreme cases of cystic fibrosis that can involve some frightening results and we were warned not to think the worst. All CF patients are different, and each child deals with it differently so we cannot anticipate how Fletcher will manage with it.
• Connect with others: it’s so refreshing when you connect with other CF families, you hear how they are getting on. You can share your experiences with the people who understand and know how you feel. One thing we have enjoyed, is seeing all the amazing success stories of various people who are living their best life despite having CF. Looking and feeling fit and healthy with so much of their lives still ahead of them. We have engaged with people through Instagram, Twitter and Facebook and it’s incredible how positive the CF community are.
• Hand sanitizer everywhere!: I have no doubt that most people become attached to a bottle of hand sanitizer. We have about 5 bottles dotted around the house and we have one in the changing bag at all times. We are a little obsessive about it, but it gives us peace of mind. When you think about the germs you may carry on your hands you can’t help but want to sanitize constantly! I also go the extra mile and I anti-bac all of the handles and light switches once a week, to keep those germs at bay on the areas we regularly handle. I have read online many CF families are very extreme with their cleaning routine, I try not to go over board but you can do as little or as much as you feel comfortable to do. However, cleanliness of hands is a must!
• Routine: get into a routine with the daily treatment necessary for your child. Fletcher currently has 15 minutes of physiotherapy a day, which consists of chest percussion (tapping around his lungs with cupped hands to help clear mucus) and he takes multivitamins and vitamin E drops every morning via syringe. We have made these the norm in his life from the get go by making it routine, he has his vitamins first thing when we come downstairs in the morning, he is use to this now and takes his vitamins well. We haven’t yet routined the 15 mins of physio, we tend to just do it as and when we remember in the day, but as he gets older I plan to do it every evening before bedtime, perhaps before I read him a book or before bath time. Anything that makes a consistent routine will mean it will just become habit.
• Exercise: one of the main things you can do to help prevent the build up of mucus, is to exercise regularly. As a baby we can only currently do his physio, however the older he gets the more he will do. Jumperoo, baby bouncers, getting him puffed out by chasing him as he crawls around the living room, are the first steps we will be taking. Then it’s trampolines, swimming, and football etc. Anything that can really puff out your child is going to puff out that mucus! Your CF nurse will tell you all the things that is great for your child, these things will play a part in their regular physiotherapy.
• Live your life as you planned to: don’t let CF change what you hoped your family life would be like. You can do all those things you hoped to do, with just a little extra care along the way. Extra hand washing or having emergency antibiotics on you just incase. Being a little more hygienic isn’t a bad thing, who wouldn’t want to be extra clean around a baby anyway?
• Family: we are so very lucky to have such a supportive family. There’s nothing you can’t conquer when you have your family on board. So get your family clued up on all things CF. Teach them the physio and take them on that journey with you. You will feel so much better if you’re as open and honest as you can be with friends and family around you. You will feel confident that people will be cautious and think before they visit or before they touch your baby. By this, I don’t mean people can’t touch your child, they will just be more aware that they must wash their hands if they sneeze or cough.

Things To Avoid

So as a simple insight into what a CF child would need to avoid, I will list below the things we have been told to be aware of. This doesn’t mean they cannot do some of these things for sure, it’s more a case of taking extra care when in certain situations.

• Smoking: need I explain anymore? Obviously, smoking is bad for anyone’s lungs. So just imagine what it could be for CF lungs! We questioned whether this included BBQ and bonfire smoke, and yes, we were told to be cautious around this also. But as I said, this doesn’t mean you’re never allowed a BBQ or bonfire in your life with a CF child, it just means to keep them away from the smoke as best as possible.
• Stagnant Water: water that becomes stagnant could harbour bacteria which may cause an infection. So be aware of wet leaves with spores on, Jacuzzi’s, unclean swimming pools, ponds, etc. We have a water-butt in the garden and we’d asked if this was unsafe for our son when he gets older and they said yes, so we have to consider removing it.
• Cough/Colds: these are two of the main concerns of CF. If someone in your family has a cough or cold, it’s best to make a conscious effort to avoid them until they are well. This will prevent the chance of your little one picking up a virus, which could cause them further infection within their lungs. Coughs and colds are nothing to worry about to the average person, but for someone with CF, these virus’ can then bring a chest infection and it this that will gradually deteriorate their lungs. Obviously, sometimes it cannot be avoided. If you as parents have a cough or cold, you cannot avoid your child. You just need to make even more of an effort to keep hygienic by washing your hands regularly, blowing your nose or coughing into a tissue and throwing it away.
• Litter: we have rabbits, so we questioned if these are dangerous to have. The rabbits themselves aren’t necessarily a risk, but there hay and litter tray is. So we’ve been advised to change his hay in another room to prevent spores from affecting Fletcher, and also as he gets older he will not be able to help out cleaning the cage at all, due to risk of infection. Lucky him really… it’s a crap job! This goes for horses, some CF patients are told not to muck out the stables. (Although, we have read online, a girl with CF does this despite her condition, and she just ensures to wash her hands thoroughly… not sure how risky this is so always consult your CF nurse)
• Cross Infection: Now if you don’t already know, two people with CF shouldn’t come in contact with one another. This is because they are at risk of cross infection. This is why a lot of the CF community speak over the internet via forums. This creates a lot to think about when it comes to having a second child, due to parents carrying the gene having a 1 in 4 chance of having a child with CF. If you have two children with CF, I assume there’s a lot more you’d have to learn about managing the risks.

Fletcher

We are fortunate that Fletcher has a “milder” form of cystic fibrosis. By this they mean, if you were guaranteed to have CF then this is the type you’d rather have. (So the consultants say) He loves to smile, he loves cuddles, he is well and he will grow up to be loved with all our hearts. Yes.. I will wrap him in cotton wool (even though they say not to) because I can; and I totally want a mega mummies boy! *shh..don’t tell his daddy*

Our son has Cystic Fibrosis. Does that make us love him any less? Absolutely not! Will he live a normal life? Of course! When you first get the diagnosis, you feel like it’s the worst news you’ve ever received and you can’t really see past that for a while. Believe me when I say that this won’t last long. You begin to see the positive side of things. You begin to realise that research nowadays has progressed so much, that you no longer need to fear the life expectancy that you read online. Your child will live a fantastic life, like any other child. They just may need a little extra TLC.

It’s not the end of the world, it’s the start of a new beginning with your new little baby!

LINK TO: Cystic Fibrosis – First Clinic Visit

LINK TO: Cystic Fibrosis – Fletcher’s Shock Diagnosis.