Day 1 of our journey: Cystic fibrosis diagnosis

Diagnosis day - my notes in hindsight:

The day that Arlo was diagnosed was a totally surreal day for us. He was 4 weeks old and other than slow weight gain he seemed perfectly healthy.

I now know that many CF babies are rushed to NICU for complications upon birth - most commonly meconium ileus where the bowel has become obstructed and therefore surgery is required.

I already count how lucky we are that Arlo did not need this and did not need to spend his first weeks in hospital.

I do however remember feeling this inexplicable anxiety in the first 4 weeks of his life. (I actually quietly wondered if I might be getting postnatal anxiety although I did not voice this much at the time). It was just like my mum instinct was telling me something was wrong (and I have learned to trust my mum instinct ever since!)

That combined with the circumstances around Arlo’s diagnosis meant that rather bizarrely my initial reaction was a sense of relief - yes you read that right!

The morning we found out, I received a phone call from a paediatrician at our hospital saying he wanted to come and see us, IN OUR HOUSE, DURING THE PANDEMIC when house visits were to be avoided, to talk about something that had come up in Arlo’s 5 day old heel prick blood tests. Alarm bells rang in my ears!

In the 2 hour wait between the Doctor’s call and his arrival at our house, I had googled what they had been testing for (of course I had been told at the time but had forgotten) and I began to convince myself of the worst - some of the conditions they had tested for would give our boy no quality of life at all or take him from us in weeks/months.

I also rather foolishly remember seeing CF on the list of things that they had tested for and remember thinking “well it won’t be that”. One of our best friends has CF and so I knew what it was, I knew a bit about it (Alex I feel like I knew so little in hindsight - so sorry buddy!) and I knew how rare it is and that we both needed to be carriers - and even then it’s only a 1 in 4 chance - so I thought it was never going to be that. Oh silly, silly me! And how stupid I feel now!

So when I heard that Arlo had CF there was huge shock that I can’t even begin to describe - I was totally winded by the news - but also a strange sense of relief that I wasn’t losing him right away and that we could get him the treatment and care he needed to have the best quality of life possible. And that weird anxiety I’d been feeling for the last four weeks? It just went!

Read more in my diary entry below:

Wednesday 26th August 2020

Arlo’s age: 4 weeks old

So we found out yesterday that Arlo has tested positive for cystic fibrosis and it’s been a surreal experience since then.

My overwhelming (and rather bizarre) initial reaction was relief. All we had been told was that something had come up in Arlo’s blood tests and that the paediatrician needed to come over in the morning to talk to us about it. So in the 2 hours that we waited for his arrival, I had gone over some of the worst possible scenarios in my mind. THE WORST. So when they said cystic fibrosis I was relieved to know what we were facing and my first thought was ‘thank god that this isn‘t an immediate death sentence’. It wasn’t a condemnation to a life of a totally debilitating disability that would leave our little man wheelchair bound or unable to enjoy any part of his life. BUT it is ‘life limiting’. That’s the type of genetic disorder we are talking about. And the worst/hardest thing is that I can’t take any of the future pain and hardship away from him - if only I could go through it all for him!

Over the day it came in waves. For the most part I just felt like Arlo had become even more special, precious - and unique. I already sensed myself absorbing and enjoying every smile (probably wind!), every funny face and every cuddle that little bit more than I had before we knew he had CF. There were moments of tears and sadness of course - it would suddenly resurface in my mind that there will be really hard times. And that nobody could prepare us for how hard it was going to get for us. Only time can tell. But mostly he suddenly just seemed the little bit more precious and I know we will spoil him, and enjoy every blessed second we get and go to the ends of the earth to give him the happiest life ever.

And now on to my other main man - Martyn - it’s in these moments that he just amazes me. He has always been such a rock and the sense of us being a team is overwhelming and comforting at times like this. We have never been through anything like this before but he said the most wonderful thing to me last night and I just knew that we would be fine. He said “I want you to promise that if either of us needs to cry then we never do it alone, we always come and find each other and face this together.”

Honestly, I should be cursing the world at how unlucky we are right now but I actually feel like the luckiest lady ever to have these 2 very special men in my life.

Part 2 (a few hours later):

I should have mentioned earlier, one of the main reasons for it feeling all the more surreal - and the reason for my comment about “knowing what we’re facing” (although I must add we still have so, so much to learn!) is because Martyn and I have an incredibly close friend who has CF. I have known him for 14 years - and Martyn has known him since secondary school. We had Alex so close to us - and such a big part of our lives (he was best man at our wedding) - and yet we never once suspected that we could both be carriers!

This is a blessing and a curse - parts of me feel foolish for not thinking that this could happen. Could we have avoided it if we had thought about the possibility of being carriers before we tried for a baby?! But then I think that we wouldn’t have had Arlo and that already feels like total sacrilege even after only 4 weeks of him in our lives. But it is also a blessing and a curse because we have seen Alex at his best, living the most fulfilled life (sometimes arguably more fulfilled than those of us without a life limiting illness). And then we have also (especially Martyn) seen him at his lowest, darkest moments when the illness has taken him out of his normal life and turned it upside down.

I do feel lucky to have Alex in our lives though - not just because he is an incredible friend and a vibrant personality. But also because now he has offered to give us advice and support. Which I know will be invaluable to us as we try and get our heads around all of this - and do the right things for Arlo.

It was a gut wrenching shock that Alex won’t ever be able to hold or hug Arlo (2 people with CF cannot meet for fear if cross contamination) - and they will have to be kept apart from each other to keep them both safe. I know Martyn is really devastated by that. But I feel like Alex is still going to be so helpful for Arlo and I hope we find a way to make it work and still see him in some capacity.

There will be plenty more sacrifices along the way I think - and Arlo will always come first. CF will have to be our first thought from now on.

But I am still determined to stay optimistic and positive that there are so many things that he can do and enjoy that any ‘normal’ child would be able to do.