Rhys Story

In recognition of Hospice Care Week, Rhys & his family shared their experiences with Demelza and how the support they have received has helped Rhys to now be discharged from our services.

Rhys stopped breathing for the first time when he was just two weeks old. For just a moment we thought it might be the blue of his baby grow reflecting onto his face – but he was actually turning blue from lack of oxygen. He was rushed to hospital in Hastings, then swiftly onto London. It was a horrific few days; I was admitted to hospital shortly after Rhys, as I was suffering from a blood clot and sepsis.

While Rhys and I were treated, they took him for an MRI to see what was happening beneath the surface. Shockingly, the scan uncovered that his subclavial artery, that ran the whole way down his left arm, was actually wrapped around his oesophagus and trachea. That’s why he had stopped breathing.

So, at just six weeks old, our little boy had heart surgery to totally remove the artery that was causing the issue. The surgery was a success, thankfully, and we were soon able to take Rhys home believing that it might be the end to our worries. However, one day I was feeding him and he stopped breathing again – we were straight back to the hospital, this time for the long haul. We ended up staying for almost eight months.

During his stay there, it was decided he would have a tracheostomy fitted and he would go on ventilation to help him breathe; it was the only way he was going to enjoy any kind of quality of life. He had the surgery the following day, and I remember when he woke up because it was the first time I’d ever seen him smile! It must have been causing him so much distress trying to breathe on his own, and you could see the relief on his face once that burden was lifted. I’m glad I caught that moment on camera. At this stage, the doctors warned me of the long-term effects of having a child on ventilation and the changes we would need to make – Rhys would now require 24-hour care.

I didn’t know how I was supposed to cope. My husband Duncan was working overseas at this point, I was meant to be going back to work after my maternity leave, and Rhys’ sister Imogen was still only a toddler. We’re also a family that loves the outdoors; how were we going to get back to any kind of normal when Rhys needed constant ventilation? That’s when Demelza came into our lives.

We were referred while still in hospital and soon we met Donna, the care team leader in their East Sussex team; everything snowballed from there. Donna personally supported me through so much in those early days. I remember that she and Elle, a Healthcare Assistant on her very first shift, travelled up to London with me so I could go to a hospital appointment for my leg without having to worry about what to do with Rhys. They took him to the park in his massive pushchair with all his life support equipment and made it seem totally effortless. They spent hours making sure he was looked after so I didn’t have to.


We also enjoyed a stay at Demelza’s Kent hospice in Sittingbourne in those early days. I was so nervous, having never stayed anywhere except hospital with Rhys before. I fretted about what to pack, what would happen if Rhys’ health took a bad turn, what it would be like to be away from home. Then we arrived, and all those worries melted away. I was used to lying awake at night, listening to the beeps from Rhys’ machines – even when we had carers in to look after him – but at Demelza… I couldn’t hear the beeps! I slept through the night for the first time since he was born. I’ll never forget that experience.

Rhys is eight years old now, and we have lots of happy memories from using Demelza’s services over the years. We’ve had a bit of everything, and it’s made an incredible difference to Rhys’ quality of life. Donna especially has truly gone above and beyond to not only help us cope with Rhys’ complex needs – he has ADHD as well as his physical disabilities – but also to help Rhys thrive on his own. Donna, Elle, and Jane (another Demelza Registered Nurse) have taken us to the beach where Rhys and Imogen have been able to splash and play free from judgement; we’ve had messy art days at Demelza’s East Sussex centre, where the kids mostly enjoyed covering the adults in paint; Donna has even given talks to Rhys’ classmates at school, helping them understand his condition and destigmatise it. She described it as Rhys’ superpower – he could breathe through his neck! She had all the kids up and running around, breathing through straws to experience what Rhys lived with every day, and they all discussed their own superpowers. The difference it made to the way they saw Rhys was night-and-day, and I’m so grateful.

Recently, we’ve found ourselves in a position we never expected – Rhys’ health has improved so much that he’s had his tracheostomy removed! This is an incredibly positive step, and we have such high hopes for his future. Soon he’ll have a surgery to close up the hole, and once that’s healed we plan to teach him how to swim – we have a holiday already booked, so it’s only a matter of time. He loves the water so much, and we can’t wait for him to hit this new height.

Sadly, this progress means he no longer qualifies for the support Demelza offers. It’s a bittersweet feeling to be leaving, when Demelza have supported Rhys his whole life. In a lot of ways, it’s like we’re saying goodbye to old friends; but we’ll never forget how much they helped us. In our time with Demelza we’ve filled so many memory books, taken so many photos, and made the most of every single moment together. We recently had an emotional farewell trip to the beach with Donna, and watching the kids playing in the ocean it felt like a real sign of the future we can now look forward to.

“I’m going to miss Demelza but I’m happy they helped me. I had fun with Donna and got to do lots of fun stuff I couldn’t before.”