What It’s Like… To Have a Child With Cystic Fibrosis

Cystic Fibrosis (CF) is an inherited chronic disease that primarily affects the lungs and digestive system of about 1200 children and adults in the Ireland. This week (April 11th-15th) is Cystic Fibrosis National Awareness Week, which aims to spread the word about the condition. We caught up with a mum, Claire Merrigan, whose 4-year-old son Mason has CF. She told us what it was like when her baby boy was diagnosed and how her family has adapted.

---

We found out when he was 3 weeks old, on December 21st 2011. Mason was born on November 29th 2011 and weighed 6lbs 8oz. When he was diagnosed, his weight had dropped to 5lbs 5oz. He had been showing signs. For example, when he was 10 days old, he choked and stopped breathing. He was also very unwell. There was no history of CF on either side of the family. We were aware of what it was and I knew a young man who had passed away from it but we didn’t know the details. In a way, the diagnosis was a blessing because we had an answer and could get what Mason needed. I was by myself when I got the call and was told to come up the following day. At that point we knew something was wrong but didn’t know what. Your world crumbles. The next step was trying to get a sweat test done but it didn’t work. Mason was just skin and bones so his sweat glands weren’t developed. That was quite an upsetting time because we just wanted to know. We were fearful for his life. We then saw a consultant and he was diagnosed through his bloods. He has the Double Delta F508 mutation which is the most common in Ireland. My daughter Holly was also taken in to get a sweat test so it was an anxious wait. We knew in our heart of hearts that she didn’t have CF but you do hear of some cases where the child is 8 or 9 before they are diagnosed. When she was getting that done, Mason was on an IV in hospital. The results came back to say that she didn’t have it but we don’t know if she is a carrier. She’ll have to get that test done when she comes of age. Mason was on IV antibiotics and had pneumonia when he was 1-month-old. He was in the hospital for 2 weeks but got out just before Holly’s birthday. He was home for 4 days before it got bad and had to go back into Tallaght Hospital. He was there from January to June before being transferred to Crumlin. It was touch and go at that stage. They found out that he had tracheomalacia and had to get an operation. He also had to get a feeding tube into his tummy at 4 months. He still has it. In January, he was diagnosed with autism. He also gets chest infections and has a speech delay. CF affects everything – the pancreas, bowels, lungs – it’s a vicious circle. One med fixes one thing and knocks something else off. When Mason was in hospital, I basically lived there. I would go home at the weekends to see Holly. When I was due to go back to work, I had to take carers leave. Cystic Fibrosis Ireland helped me out with that I can never repay then for that. You are stuck in a situation that you never expect to be stuck in. They have become family. You just have to get on with it but there is a great deal of support from the CF nurses and I am lucky to have a close network of friends. Usually I’d be up at 6am or 7am. Mason has a 10-hour feed overnight, starting at 8pm. He gets enzymes at the beginning and end of the feed. At 6am, the machine is turned off and his system gets flushed. Occasionally I’ll get an extra our in bed but other times I stay up. I get Holly her breakfast and get both of them dressed. Then I get Mason his meds and nebulised antibiotics. He gets at least 6 medications in the morning. Then it’s out the door. Mason goes to physio which is very important. We have to do the exercises with him every morning and evening.. Then it’s off to school. When home, I get his evening meds ready. Then it’s time to collect Holly so it’s dinner, homework and then more medication and nebulisers for Mason before his 10-hour feed. At the end of it all, he’s still a little boy. He goes to playschool. That has been a massive deal and he’s come on leaps and bounds. There is also a support page on Facebook. Talking to people that know makes it easier. The kids have such get up and go. This is something they have been born with. They don’t know any better. If they can smile and get on with it, so can we. Mason and Holly get on so well. I always feared that she would resent him but they have such a strong bond. They shared a bed and she’s a fantastic help. Sometimes, I don’t understand what Mason is saying but she does. Don’t get me wrong, they do fight like any brother and sister but everyone always comments on how close they are. I think more awareness is needed. Ireland has the highest number of incidents of CF in the world. I think people know about it but don’t know that it can affect the whole body. That’s the great thing about the Team Mason Facebook page. People have said to me “you’ve taught us so much.” That is so important to hear. I think gene testing would also help because one of my parents gave it to me. I’m all for newborn screening too because, without it, Mason probably wouldn’t have seen his 1st birthday. We are also actively campaigning for a new drug, Orkambi, to be funded by the HSE. It can potentially be a life-saving drug for those with DDF508 type CF as it has been found to prevent the risk of infections and help weight gain. As far as I’m concerned, you can’t put a price on our son’s or anyone else’s life. It is very expensive but that’s why the appropriate people need to come together and agree on a suitable price. The mini marathon is where Team Mason was created. It was a very emotional thing for me to do and it helps to spread awareness. Every year, the numbers grow and more people know about it. It’s also a great day out for families and friends. It’s such a good atmosphere and obviously, we’re always looking for more people to join us. All you have to do is contact Cystic Fibrosis Ireland. This week is Cystic Fibrosis National Awareness Week with Friday 15th as the National Awareness Day, 65 Roses Day. For more information or to get involved in the mini marathon, visit the Cystic Fibrosis Ireland website HERE.