This is the story of Samuel whose journey involves being admitted to HDU at his local hospital in Cornwall and then being transported to PICU in Bristol. Samuel’s Mum has shared their family’s experience. Please scroll down for latest updates in 2025.
We have been home for about six weeks now and have a smiley, happy three month old baby who is full of life and wonder at the world around him. We have had good weather pretty much since we got home and he has been out in the garden, staring up at the trees, listening to the birds singing and trying to keep up with his hyperactive two year old brother! He has even had a couple of trips to the beach but has not quite managed to brave the sea. It’s almost as though the events of the month before were just a bad dream.
To put that into context, on Thursday 13th April 2023, I was living the worst day of my life. Having come to Accident & Emergency on Monday night, with suspected bronchiolitis symptoms (Samuel had been a bit unsettled and not feeding so well, with mild cold symptoms), little did I know that enterovirus had ravaged his heart, and it was now raggedly pumping at a fraction of its capacity. I now found myself sitting in the HDU (High Dependency Unit) in Royal Cornwall Hospital Treliske, holding Samuel whilst he weakly held on to life, his colour fading, his chest barely rising as he fought for breath through an oxygen mask. I could feel him getting weaker in my arms and he was so unstable that I felt like I was holding a butterfly – he was so fragile that any wrong move could be too much, and he might let go. Every breath out was a prayer to God but all I could come up with was “please, please.”
It was an out-of-body experience – I felt like an extra in a film, with no script and no idea what I should be doing – as an increasing number of doctors and nurses rushed around us, calm and collected, making plans and clearing and preparing the room to try and intubate Samuel. This wasn’t the plan – he was supposed to have been air-lifted to Bristol by the WATCh (Wales and West Acute Transport for Children) team earlier that afternoon, but he had deteriorated and was no longer stable enough to transfer. The team at Treliske were absolutely amazing and did their best to reassure us, but it was also clear that they were anxious for Samuel to get to Bristol as soon as possible and his ability to travel was now seriously in doubt. Working with the incredible WATCh team, and anaesthetists, paediatricians and nurse specialists from across the hospital, they pulled out all the stops and managed to intubate and stabilise Samuel for transfer. The calm kindness and compassion shown by all of those involved was humbling. I remember looking around me and then at the tiny baby fighting for life in my arms, and in addition to the realisation and horror that all of this was happening, and how it might end, I remember feeling profoundly grateful to all those amazing people focused at that moment on saving him. He was the centre of our world but for that moment it felt like he was the centre of theirs too. I couldn’t believe the time, skill and resources being deployed to save our little baby. We weren’t celebrities or royal, just people in need of help – and it was there for us, without question and I felt so much love for all of those people fighting for Samuel at that moment.
We then followed the ambulance up to Bristol and arrived at the Children’s Hospital at about 3am. We were met by Samuel’s allocated PICU (Paediatric Intensive Care Unit) nurse, who reassured us that he was stable, settled and remained sedated, and convinced us to get some rest in the parents’ accommodation at the hospital. The days after that were a blur – waking up with the sinking realisation of where we were and why. Countless conversations with nurses and specialists in intensive care, cardiology and infectious diseases. Ventilators, tests, discussions about potential outcomes and worrying statistics. Myocarditis and cardiomyopathy – heart failure. Scans, experimental anti-viral drugs and constant monitoring – taking steps forward, the odd step back, but overall stability, then a steady climb and improvement in Samuel’s condition. We started to dare to be hopeful.
In addition to the hours spent by Samuel’s bedside, we often sat in the parents’ room in PICU. We talked with other parents, recognisable by the same exhausted look in their eyes, and formed a sort of bond with some – a kind of solidarity out of desperation to feel that we weren’t alone. We developed a kind of routine. Incredibly, we were offered accommodation at Grand Appeal House, keys handed to us without question or any timeframe – we could use the room for as long as we needed. This was such a weight lifted.
PICU became our world. The teamwork between the consultants and nursing team, and their ability to pull together so many different specialisms for Samuel’s care, was awe-inspiring and humbling. We will never forget the kindness of the nurses and their ability to put us at ease and “normalise” being in PICU – encouraging us to get involved in bathing, changing nappies, and holding Samuel, despite his breathing equipment, the dozens of wires and monitors going crazy. A lovely nurse made a banner to brighten his bed and played him Disney films on her phone.
Things then inexplicably started to get better. The first big step was taking Samuel off the ventilator, followed by a series of steps down to less invasive breathing support and oral medication. A couple of weeks later we were being transferred to onto a ward (Dolphin), initially in HDU. I couldn’t (and still can’t) quite believe the pace of improvement, as breathing support was scaled right back and eventually removed altogether and Samuel started to feed for himself again. Fast-forward to the Coronation weekend, and we were transferred back to Truro by ambulance. Back to a sign welcoming Samuel back to Polkerris ward, and some of the familiar nurses who saw us being transferred in such different circumstances just a few weeks earlier. Fast-forward another week and here we are at home, trying to catch our breaths and remember how normal life works.
Samuel has regular scans and continues to improve. He won’t remember the last couple of months and hopefully as he grows stronger, he won’t have to deal with any serious, ongoing effects following his illness. We will of course never forget this experience, though we will learn to live with it – the fear and pain we felt at first, but also the love and support of family and friends, and the amazing hospital staff who were part of the journey.
The faces and names of so many doctors and nurses are now burned into my memory. I may never be able to thank them all in person, but I hope they know that their importance and the value of the incredible work they do, cannot be overstated. From our own experience, they represent the best of human skill and compassion. To each and every one of you: Thank you, thank you, thank you.
Update April 2025:
2 Years on since Samuel’s admission to PICU, Samuel is a happy, cheeky force to be reckoned with! Samuel’s family shared a few recent pictures and the ODN is delighted to see his progress.
Samuel’s mum, Maria said “Thanks to the incredible care he received and thanks to God, our son came through that darkest of times and we emerged intact as a family. As parents, we are changed by the whole experience – still haunted by the trauma of that time but also knowing how incredibly lucky we are. For me, I feel as though the experience took off a hard outer layer of skin, making me feel and care about the rest of the world more than before.”
The family also expressed their thanks to the WATCh team for transferring Samuel so quickly and the support of The Grand Appeal during his stay.
