Joseph is our lovely, lively, cheeky son who just so happens to have Cystic Fibrosis.
Joe was born 9lbs 9 ounces 15 days over due by induction. After a very easy pregnancy and a relatively easy birth there was no indication that Joe was anything but a happy healthy baby boy.
He was perfect. We got him home and soon started to learn all there was to know about each other.
We first realised something wasn’t quite right when he wasn’t gaining weight as well as we’d have hoped and that he struggled with feeding- he wanted feeding constantly but would also vomit a lot. We expressed concerns with the midwife but she encouraged us to keep going as we were and so I thought nothing of it..
We had the routine heel prick test during this time. A little while later I had an unexpected knock on the door. It was the health visitor with another lady in tow who I had never met. They came in and sat down and the new lady produced leaflets from her bag and started saying things like “have you ever heard of cystic fibrosis.”
She explained that Joe had “abnormal blood results” and asked if I had anyone who could go to the hospital with me.”
Feeling numb and fuzzy and outside of myself all at the same time I began to panic, luckily Robin came home for lunch about ten minutes after they arrived so we could process this news together.
“It’s possible your son may have cystic fibrosis. You need to take him to hospital for a sweat test tomorrow and speak to a consultant. We can’t confirm that he does have the condition, you need to get him tested first.” And the other thing they said was “don’t look it up on the internet. Wait until you have spoken to the doctors.” Alarm bells rang in my head and all I wanted to do was research research research!
We clung on to the idea that it wasn’t a confirmed diagnosis and that it must be a mistake! Not that we even really knew what Cystic Fibrosis was.
We needed someone to come with us to help process the information we were going to receive. The Health visitor was adamant we took someone with us. And who better than my mom. She didn’t hesitate and travel ed the one and a half hour journey up to us to offer her support.
So off we went to the hospital to see the consultant. We were taken into a room where there were three health professionals and I held my little baby on my lap. This is when they told us “your son does have cystic fibrosis we are very certain of this. The sweat test is just confirming what we already know, I’m very sorry” I could feel myself looking down at the room from a high up place. I could see my mom with tears in her eyes, my husband with a thousand questions on his lips and me holding my perfect baby oblivious to it all. I couldn’t hear what they were saying after that. I held my son down while they did the sweat test and watched him struggle and cry. I fed him his bottle and all the time I was just numb.
Now I know why the health visitor was so adamant we take someone with us to help. I couldn’t process this information. We were given a prescription for us to pick up and start using straight away for antibiotics. It wasn’t until I got into the chemist in the hospital that it hit me. My perfect Joe has a life shortening disability and there’s nothing I could do about it. There is no cure. I began to sob.
My mom took me out of the room and we went and sat on a bench in the cool air. I couldn’t stop crying. It was so unfair! Why had this happened to him? He didn’t deserve this! They must have made some kind of mistake! My mom held me and soothed me. We went and sat in the car. And we went home.
So, our Joe has cystic Fibrosis.
So far he has had lots of courses of antibiotics, tons of medication and one two week stint in hospital on IV antibiotics.
There have been ups and downs and not exactly where you would expect them. Joe has been lucky so far in that he has only had to be admitted to hospital for IV’s once and has remained relatively well in terms of his lungs. Many of the problems we have faced have been due to his pancreas not functioning, reflux and food refusal resulting in Joseph being unable to maintain a good weight and us as a family needing to seek psychological support.
Despite our initial fears Joe is still our perfect boy. He’s now at school and is bright, happy and loving life just like all of his little friends. CF is in no means easy, it’s scary and life changing, but Joe is all the more amazing for the way he copes with it.
Joseph has CF, but he doesn’t let Cystic Fibrosis Define him.
If you would like to find out more about what CF is and to donate to the CF Trust please follow THIS link.