“The House was our saviour”: Arthur’s story

***Trigger warning: infant loss***

Arthur was diagnosed with “near-miss” sudden infant death syndrome (SIDS) in April 2023 at just 10 days old. He had a four-month-long journey, being transferred to two different hospitals, followed by a hospice, where he sadly died in August 2023.

His parents Jenna and George spent 67 nights in Ronald McDonald House Tooting while their son was receiving treatment. They have shared what it meant for them to be so close to their child, and how the facilities relieved some of the pressure they were feeling while going through such a difficult time.

Arthur was born on 15 April 2023, the day after his due date. We had him home for 10 glorious, albeit sleep-deprived days, but on the evening of day 10, our beautiful boy stopped breathing (later diagnosed as “near-miss” SIDS). We were rushed to St Peter’s, our local hospital in Chertsey, and there he was stabilised enough to be transferred to the Paediatric Intensive Care Unit (PICU) at St George’s Hospital in London.

Within the first few days of Arthur’s admission to the PICU ward, nurses very gently suggested we might like to apply to stay in the Ronald McDonald House. And thank goodness we said ‘yes’, as we were in the PICU with Arthur for almost three months.

Arthur’s hospital journey was an absolute rollercoaster. Following multiple medical tests, it was confirmed that he’d sustained hypoxic-ischemic encephalopathy (HIE), a brain injury caused by a lack of oxygen. As the weeks went by, it was evident that Arthur’s brain injury was affecting him in ways we couldn’t have imagined, and he gained a whole host of complex needs. Devastatingly, it became clear that Arthur needed the support of the specialist paediatric palliative care team to help better manage his symptoms and to get us acclimatised to him likely having a short life.

We were transferred to Shooting Star Children’s Hospice, where Arthur passed away, on 17th August 2023. He died peacefully in my arms aged four months and two days.

We could not be more grateful to the Tooting House. We were able to spend those precious months with Arthur without worrying about accommodation and travel logistics, not to mention the financial strain we would have been under.

We were so traumatised by our experience that I don’t know how we would have managed without their kindness. Furthermore, we were amazed at just how close the House was to Arthur. We estimated we could get to his bedside in less than five minutes; that was so reassuring given how unwell Arthur was. It meant that we could get some sleep overnight and we were comforted knowing that we could be with him in a heartbeat, if needed. We couldn’t relax given Arthur’s condition, but having the House allowed us to reset and recharge so that we were able to focus on our little boy.

Another thing I loved was the generous food donations in the House. It may seem insignificant to some, but it really did lift my spirits knowing that there were delicious things in the fridge for us. One highlight was a huge basket of Cadbury Creme Eggs – my favourite. We were also given some care packages for the King’s Coronation which was a nice treat, and my husband even received a gift for Father’s Day.

There were so many things about staying at the House that had a positive impact on our family. The most important, of course, was allowing us to always be close to Arthur. It was also so vital that we had a private space and while we weren’t living anything close to a normal life, it was the closest to normal it was going to get. Simple things like being able to have a decent shower, do our laundry (and Arthur’s), order a takeaway, or even get a postal delivery direct to the House. Another element that helped us so much was getting support from other families staying in the House. We felt less alone and had people to talk to who understood what we were going through.

If any family are ever in the difficult situation of having a child in hospital and are offered accommodation at a Ronald McDonald House, you’re in safe hands. And if you’re considering donating or fundraising, this really is an incredible Charity.

Ronald McDonald House Tooting was our saviour during those hard months. I don’t know where my relationship would be right now if we hadn’t had a safe space to retreat and let our emotions out in private. It really is a wonderful thing to provide families of incredibly sick children somewhere to call home. Honestly, that’s not just some marketing phrase. Over the course of three intense months the Ronald McDonald House truly became our home, and we were reluctant to leave such a caring and safe environment – one where we were enabled to look after our brave boy. Thank you so very much Ronald McDonald House Charities UK.