Arthur Hawkins Swale 15/04/2023 - 17/08/2023

Arthur was born on 15th April, the day after his due date, following a tough pregnancy and a long, long labour! We had him home for 10 glorious - albeit sleep-deprived - days, but on the evening of day 10 our beautiful boy stopped breathing. I called an ambulance while George started CPR and an incredible paramedic arrived within minutes. We were rushed to St Peter’s hospital (where Arthur had been born) and there he was stabilised enough to be transferred to the paediatric intensive care unit (PICU) at St George’s hospital in London. We arrived there in the early hours of the morning and our newborn was taken under their wing. I’ll be honest, George and I have blanked out the next couple of days… seeing our motionless baby hooked up to so many wires and machines was too traumatic. We held his tiny hands and hardly left his side.

The next (almost) 3 months in the PICU were a rollercoaster. Arthur was monitored constantly and endured so many tests. We didn’t know if he was going to survive coming off the ventilator, but oh how we celebrated when he did. We were slammed back to reality when it was confirmed that Arthur had sustained hypoxic-ischemic encephalopathy (HIE); brain damage caused by lack of oxygen. In that moment all our hopes and dreams for Arthur’s future were forever changed. We were told it was impossible to know what Arthur’s needs would be, but the consultants said the part of his brain that had been most injured affected movement. Ok, we thought, our boy might not walk, but we’ll do everything we can to give him a great life regardless.

As the weeks went by, with George and I staring at monitors and listening to alarms, with an endless stream of therapists and consultants coming to see and assess Arthur, it became clear that his brain injury was affecting him in ways we couldn’t have imagined. He had lost some of his automatic movements, so didn’t blink and couldn’t swallow. Who knew that not being able to swallow was such a crucial thing. [All humans have secretions which we naturally clear by swallowing and coughing. Because Arthur couldn’t do this we had to manually suction them out of him. George and I quickly got trained how to do this to keep Arthur’s airway clear.]

The most distressing element that we didn’t see coming was Arthur’s dystonia (uncontrolled muscle movement). This presented itself in various ways; sometimes his arms would look like he was a little boxer trying to punch you in the face (quite adorable), but sometimes his feet would shake, or his neck would twist to an angle it wasn’t supposed to be at, and at other times his whole body would go stiff. The pain this caused Arthur was extreme.

The incredible consultants told us bluntly that Arthur’s swallow reflex wasn’t returning and there is no cure for dystonia. We didn’t know how else his brain would turn against his body in future. It was here that the specialist paediatric palliative care team (SPACE) came in. They helped to better manage Arthur’s symptoms, and began to get us acclimatised to Arthur likely having a short life.

We went to visit Shooting Star children’s hospice and the reality that our baby needed to go there and not home with us kicked in and I felt like I couldn’t breathe. But what a magical place Shooting Star is. Not only do they look after children and their parents when end-of-life care is needed, but take in children with life-limiting conditions for respite and give them the respect and nurture they deserve.

During our time at Shooting Star, one of the difficulties for us was the need to “parallel plan”. Would Arthur be able to come home with us - with a care package - or was he going to pass away in the near future? Through all this, Shooting Star gave us precious time as a family to enjoy being together (as much as we could given the situation) and to be in a less medical setting. The SPACE team helped keep Arthur calm and enabled us to have lots and lots of cuddles, take him in the garden and even go swimming together. I can’t describe how difficult it is to try to get your head around the fact that your baby could die at any moment (we were told on many occasions that he could leave us within hours, but he kept pulling through!) but in the same breath we were prepping to go home with Arthur to live a different life than we’d ever imagined.

Just over a month into being at Shooting Star, Arthur stopped breathing again. This time he came back to us without the drama and resuscitation of that dreadful first night. But Arthur had changed again; he had more seizures and his little body decided to start shutting down. We’d been told the whole time that “Arthur is making his own decisions” and “Arthur will tell you when it’s time”. Up until this point we couldn’t comprehend that, but in those following days it felt like Arthur was telling us he was ready to go.

In the end, we lost three versions of our darling Arthur (the one I gave birth to, the one after he stopped breathing, and the one after he stopped breathing for the second time). He died peacefully in my arms aged four months and two days. He was a gorgeous, brave boy throughout and we would have done anything and everything for him.

We will be eternally grateful to all the people who looked after Arthur (big shout out to the NHS! The PICU team at St George’s in particular). I’m sure in time we will fundraise for St George’s and Ronald McDonald House (who gave us a room to call home for those three months in hospital), and the other wonderful charities that are supporting us. But for now, we’ve chosen to fundraise for Shooting Star in Arthur’s memory because they rely so much on charitable giving. They got us through the worst time of our lives and cared for Arthur with dedication and compassion. They will continue to support George and I for the coming years as we cope with Arthur’s passing.

Thank you for reading and letting me share Arthur’s story. Feel free to send this to friends and family to raise money in Arthur’s memory and to highlight the importance of hospices like Shooting Star.

Arthur, we love you, your mummy and daddy xxx