We trust in science and know that nothing will get in Arthur’s way

I remember Arthur’s diagnosis like it was yesterday. It was a Sunday afternoon and we’d had family round. My husband Chris had football on TV — then my phone rang, and it was Great Ormond Street Hospital (GOSH). My heart sank and I burst into tears. I went online and searched CF, then spent the next day hysterically crying. When I met the team at GOSH and they explained things I felt like I could breathe again.

I didn’t sleep for five weeks

Arthur’s birth was very traumatic: long labour, forceps delivery and he came out not breathing. I remember laying there desperate to hear a scream. He got whisked off to NICU and spent a few days there. He had an infection on his lungs, but was responding well, then suddenly he was plummeting and was rushed to Addenbrooke's Hospital with a suspected blocked bowel. 

We followed the ambulance, praying we would see Arthur again. It felt like a surreal nightmare. A doctor asked me if we had a family history of CF - the signs must have been clear.

Arthur recovered, but when we got him home, he was always hungry – always crying for more milk. I didn’t sleep for five weeks. I remember saying to one of my friend’s that I felt ‘something was not right’.  After the diagnosis I was robotic, just doing everything I needed to. Every instruction GOSH gave me, I did religiously – I remember being so tired but being up and ready and bouncing on his physio ball. I was terrified of anyone going near him.

Leaving the house was hard, needing to balance feeding and Creon dosing. It was not the maternity leave I expected.

After five months, COVID-19 hit. We went from being a bit calmer to high alert again. We had to stay inside our flat for nearly five months. When GOSH told us we COULD go out for a walk, we would cross the road if we saw someone coming along.  I started suffering from PTSD. We had no idea what our lives would be like, we just knew we had to do everything in our power to keep Arthur fit and well.

Remember that no person has the same journey

Initially, CF consumed my life, but now we don’t let it affect us. Arthur is very active: gymnastics, swimming, trampolining, soft plays, climbing.  He also goes to nursery 2.5 times a week – which he absolutely adores. It’s been hard letting others watch Arthur, but we have small circle we trust to be “on it”.

It’s so important to raise awareness of CF. I had no clue what it was and when I DID Google it it was doom and gloom. Social media only really highlights the negatives too. The hardest part for me was understanding the diagnosis; I just wanted someone to say “it will seriously be ok and his life will be normal”. For us, this is normal. 

My advice to those facing a new diagnosis is allow yourself time to get your head around it. I found myself avoiding the subject because I did not want to deal with the reality of it. I also hated the thought of people feeling sorry for me or for Arthur.  I worried about his future, but all that was, was wasted energy – at the end of the day, if you listen to instructions and do what the experts say, you are doing everything in your power to keep them well. Remember that no person has the same journey. Ask questions.

We trust in science and know that nothing will get in Arthur’s way

Remember, without these genes, they wouldn’t be your child—that is what makes them extra special.  They are here for a reason; they chose you for a reason and they are going to have an amazing life. We trust in science and know that nothing will get in Arthur’s way.

Children with health conditions are special: they are brave, they are fearless, they are champions. I have so many hopes for Arthur. Arthur has so much character and lifts everyone around him.  His future dreams are endless! He loves to jump!!  He loves to dance and sing and laugh.  He loves dinosaurs, soft toys, painting, reading, and soft play.  He is the most addictive personality to be around. He makes me so proud.

Cystic Fibrosis Trust is striving for a life unlimited, and it means everything— that is the goal. The charity supports and raises money for medical research and help for the families – it is vitally important.

Cystic fibrosis (CF) affects every family differently and a new diagnosis can bring up lots of questions. We want you to know that you are not alone. Our Parent Information Pack will give you information about the support that is there for you should you need it. Read or download a copy here.

Thanks to your support, we can continue being there for families dealing with a new CF diagnosis, providing support, information and reassurance when they need it most. Join us for cuppa this FeBrewary and help make sure children with CF like Arthur can live a life unlimited.

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