Matthew's blog - "ECMO came to our rescue when literally all hope was lost" Matthew's daughter Tessa was found lying on her bedroom floor barely conscious. Here, he tells her story through a father's eye. The simple fact is that our Tess had been ill for some time. She’d seen numerous doctors over the previous couple of years for increasingly common and severe bouts of dizziness and fainting. However, other than low blood pressure no-one could find anything measurably wrong and we were assured that it was probably nothing, lots of teenage girls feel dizzy, it will pass. Deep down, therefore, it was more a case of my worst fears being realised than a total surprise when I got a call from my wife and Tess’s mother, Lucy, that she’d been admitted to Yeovil District Hospital following a cardiac arrest at home. Tess had been feeling under the weather and been off school for a couple of days – nothing alarming there – but Lucy had come home after work that Tuesday afternoon in January 2017 to find her barely conscious. She called an ambulance immediately, which arrived in just a matter of minutes – amazing considering we live in deepest rural Dorset. Next came a second ambulance, then the air ambulance, CPR who knows what else in her bedroom and within the hour she was rushed straight through A&E and up to Yeovil ICU. Two to three hours later Lucy, our two youngest daughters, Alice and Isabel, and I met up at Tess’s bedside. She was unrecognisable – intubated and connected to numerous machines and drips. We’d all gone into the hospital on the insistence of the consultant, who had said we needed to be there and that we needed to be together. And his message when I arrived at the hospital was clear and stark – they were trying absolutely everything they could; they were leaving no stone unturned, pulling out all the stops, but it wasn’t working. She was continuing to deteriorate and they didn’t really know why and didn’t know how to stop it. Her kidneys had stopped working and worst of all her lungs weren’t functioning. By 10pm that night we were told there was nowhere left for her to go. It was just a matter of time. We now realise that this is a place many, if not most, Extracorporeal Membrane Oxygenation (ECMO) patients inevitably have to reach as part of their clinical journey. But at this desperate point in Tessie’s and our story, and entirely unknown to us at the time, there was an intense discussion going on between the Yeovil ICU and the ECMO team at Royal Brompton. The long and the short of it – there is only one team and a handful of ECMO machines available for the whole of the South West of England and Wales. Was the team available or were they already out attending to another emergency? Was there an ECMO machine available? Did Tess meet the clinical criteria for ECMO? Was it really needed? Could it really help? Would she survive long enough for the team to get down to Somerset? The tiniest sliver of hope came at about midnight. First, the consultant and nurse came to tell us that she hadn’t deteriorated further in the last couple of hours. Again, they didn’t really know why (an explanation only emerged weeks later) – but this was obviously good! Second, they could now confirm that there was a specialist team coming down from Royal Brompton in London with a machine only made available in the most severe cases that just might help. This, of course, was ECMO. That particular night was a cold and foggy one and the Brompton team were coming all the way from London in an ambulance. They eventually arrived at about 4am. I was waiting for them in the deserted reception area at Yeovil Hospital. I pointed them towards ICU and as they went up in the service lift with their equipment I ran up the stairs to join them. What followed was lengthy consultation between the two clinical teams and inevitably we were left outside in the waiting room, not sure what we were waiting for exactly or how long it might take. The moment when somehow it all broke open was when the Brompton consultant came to speak to us – maybe an hour or so later. She explained what ECMO was – that it would take the place of Tess’s lungs until they were able to do their job again. That it would buy her the time she needed. Truth be told we weren’t really processing what we were being told – not at first. And then we did. “Are you saying that you can save her?” “Yes”, she said. Simple as that. And they did! Although, as it happens it wasn’t quite as simple as all that. Tess was put onto ECMO in the Yeovil Hospital ICU operating theatre and then taken up by ambulance to Royal Brompton. Within a week she was off ECMO and flu had been identified as the primary diagnosis – the cause of her collapse and multi-organ failure. However, it was four long weeks and several inexplicable, hope-busting relapses later before Tess was given an underlying diagnosis of Addison’s disease. Addison’s is a rare but treatable autoimmune condition, which causes the gradual destruction of one’s adrenal cortex resulting in loss of production of the life-saving hormone cortisol. Amongst other things, Addison’s can present with symptoms such as bouts of dizziness and fainting. (The point at which Tess’s condition inexplicably stopped declining on the night she collapsed was almost certainly because of hydrocortisone treatment – a cortisol substitute – that the consultant decided amongst many other things to try. Although we didn’t know it at the time this is precisely what she needed to survive until the ECMO machine arrived.) As I’ve already suggested, in essence, ours is probably a fairly typical story for ECMO patients and their families. The word ‘miracle’ comes up again and again when we and other patients and their families talk about ECMO. ECMO came to our rescue when literally all hope was lost. I still have to try hard not to contemplate how that night in January 2017 would inevitably have ended had the team from Royal Brompton not been available. Likewise, I try not to speculate whether someone else might have needed ECMO that same night after Royal Brompton team had already committed to coming down to Yeovil for us. Instead, we just thank our lucky stars! We are deeply and forever grateful to the staff from both ambulance services, from Yeovil District Hospital and of course Royal Brompton. Tess is currently in her second year at York University, leading a full and active life. To support our #MoreTimeMoreLives ECMO Appeal you can get tickets for Royal Brompton Carols by Candlelight where Tessa will be doing a special reading.