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.