“Our hope is for Rufus to be ordinarily extraordinary”

The birth of our baby boy

Our son Rufus's CF journey (not that we realised at the time) actually started at 34 weeks of pregnancy. The scan showed fluid swirling in his bowels and stomach, and I still have the clear image of that ultrasound in my head to this day. Shortly after, we were given the possible reasons for the cause of the blockage, one of them was cystic fibrosis and Alix was referred that day for another scan and a test for carrier status.

The scan the next day confirmed that Rufus definitely had a blockage, but until he was born, we wouldn’t know the extent of it. Alix’s results came back the same week, confirming she was a carrier of CF. Later that day, I was given an urgent appointment for bloods to check whether or not I was also a carrier. The results confirmed that I was just two days before Alix’s waters broke. Due to this, we were convinced that Rufus had CF, but at this point we knew very little about the condition.

Rufus was born by emergency C-section at 2:33am on 20 July 2022, weighing 7lbs 13oz. We got to see Rufus for only five minutes before they took him to the surgical ward in the neonatal unit. Early that morning they started their scans and checks to identify the extent, location and cause of the blockage in his bowels. They operated on him at 9am on 22 July and he was in theatre for five hours.

Rufus was then nil-by-mouth for around two weeks as he was unable to have a bowel movement. When it finally happened, we've never been so happy to see a baby poo in all our lives, even the nurses were sharing in the joy!

We started to bottle feed Rufus and were required to tube feed him every three hours. This was to ensure his stomach was tolerating the feeds, as he'd not been able to build up tolerance while in the womb due to the blockage. Rufus sadly started showing signs of an infection. His temperature and pulse were slowly creeping up, eventually his oxygen level started to reduce and at this point he was really unwell. We later found out that this infection was sepsis.

He was started on breathing support to fully collapse his lungs when he breathed out, allowing him to gain more oxygen with each breath. He was on this for five days. Day three was when Rufus went into supraventricular tachycardia, where his pulse went from 180 to 320 beats per minute. I've never seen four doctors move into a room as quickly. They set up all their equipment, prepared the necessary drugs and just as they were ready to start, Rufus thankfully brought himself out of it and went back into a normal rhythm.

Things then slowly started to improve. Rufus restarted his feeds and his PICC line was eventually removed, which was a great day to be able to finally hold our baby without any lines in him!

He was discharged on 25 August, at just over five weeks old. It was amazing to finally get him home but our joy was short lived. Rufus just wasn’t himself and we had to rush him to A&E just a few days after bringing him home. We quickly realised that he would need to be transferred back to Leeds General Infirmary, as he was showing signs of NEC (Necrotizing Enterocolitis), meaning that he would need another PICC line for him to go nil-by-mouth again for 7-10 days. On top of that, he also got COVID-19 and was under isolation for the next 10 days.

The moment he came home

Despite battling another infection in which his line had to be removed again and replaced with a cannula, Rufus started to make progress and was able to come home again on 6 October. It has been difficult to navigate at times and we’re still learning how to balance his CF medication, but he's now gaining weight and is a really happy baby.

Having him home is amazing and means we can all move onto the next stage of our lives as a family of four. Henry was over the moon that his little brother was finally home. They have since become the best of playmates and Henry constantly says, “Henry happy, Rufus happy”.

Our goal is to keep Rufus as healthy as possible until he can start Kaftrio when he’s older. It's less daunting to have a goal; something to reach.

The social media community

I started posting on Twitter as a place to vent, I'm not sure what I expected, but it definitely was not the response I received. So many people were so supportive, sharing their stories and buying things for Rufus to have in hospital – which came from all over the world. My place to vent very quickly became somewhere I could raise awareness, help other people going through the same with a baby in hospital, but also raise wider awareness of CF, which is so needed.  

It really has restored my faith in humanity. And now I don't think I can stop, otherwise Rufus's extended family would miss him, as they remind me daily!

Support from the Trust

All the leaflets and information that was given to us in the early days about CF were from the Trust and it made a big difference. The leaflet for family and friends was invaluable and made so much sense. We will still get strangers asking the wrong questions or saying the wrong comments, but at least we could equip our family and friends with the right things to say, making it a little easier when they did meet Rufus for the first time.

Our hopes and dreams for Rufus are for him to be ordinarily extraordinary. After everything he’s been through already, the fact that he can choose to do what he wants is enough for us.

You can follow Rufus's CF journey on Twitter @BenOxlade1. 

Let’s get to a life unlimited for everyone with CF – faster.

Our goal is a day where there are effective treatments for everyone with CF. We need life-changing treatments, treatments that minimise harmful impacts like hearing loss, treatments that work for every person with CF – and we need them now. But we can’t get there without your support.

There are lots of ways you can support us this festive season, from playing our raffle through to doing some festive fundraising or buying Christmas cards and gifts for a loved one from our online shop.  

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