I am running an obstacle course race ‘Rocket Race Apollo’ to raise money for the Pediatric ICU at the John Radcliffe Hospital in Oxford. The team and resources there recently saved the life of 8 week old little Connie who is the daughter of two very dear friends of mine. Please read the blog article below which was written by her Mum, my friend Christina just weeks after their encounter with this life saving facility and the people that saved Connie’s life.

The Web

Two weeks ago I looked at my 8 week old daughter and knew something was wrong with her. Some call it a mother’s instinct but I think it’s probably more than that, somewhere down the line they will discover that a ‘mother’s instinct’ is in fact the sixth sense that just hasn’t been formally discovered and named yet. How else can I explain the feeling I had in the pit of my stomach between the Tuesday when I took her to the out of hour’s doctor, and the Friday morning when I called an ambulance? There is no logical explanation for the feeling of impending doom that washed over me every time I looked at her throughout that time period. I knew something was coming, what I didn’t know was what it was, how it would develop and most importantly, how it would end.

We took her to the out of hour’s doctor on the Tuesday night and, at that stage, were told it was just a cold and she would fight it on her own. It was just a cold. On the Wednesday night we took her to A&E where the doctors confirmed she had an upper respiratory tract infection but that her oxygen levels were at 97% and so she was holding her own and we should go home. They were right, she was holding her own. On the Thursday night my Dad, my husband and I took it in turns to stay awake with our daughter and keep an eye on her. She had a conscious adult with her for the entire night. I went to bed at 4.30am and at 6.30am when my 4 year old son jumped on my head and woke me up I grumbled for a bit and then realised that the cry of my 8 week old daughter that I could hear from downstairs was different. That sixth sense leapt into action and I had to get out of bed, I had to go downstairs and I had to see. I watched her little chest pumping up and down in an abnormal manner and I dialled 999. That is when my encounter with The Web began.

In the time it took me to hang up the phone, run up the stairs and pull a jumper over my head there were 3 highly qualified, highly skilled and extremely kind paramedics in my living room examining my daughter. Her head was bobbing with the exertion it took for her to breathe and they confirmed they would be taking her into hospital. The paramedics confirmed my daughter’s oxygen levels were at 87% - that is too low – so on our drive in a highly kitted out ambulance which had more tech and more space than I had ever imagined they administered a nebuliser to my daughter and her stats picked right up. The feeling of cold dread that had been running through me since Tuesday eased slightly and I felt immense relief that we were going to the hospital. We arrived and were taken straight through, our daughter was admitted and we spent two days in a ward with three other children who had bronchiolitis. That was our diagnosis, bronchiolitis, positive for the RSV virus. Let’s be clear, on the Tuesday night it was just a cold and now, on Friday morning, it was still just a cold. The doctors had been spot on every step of the way.

Saturday was the day it all changed. A nurse had told me to pop home for a nap as I couldn’t stop crying; the sight of my daughter with oxygen tubes and a feeding tube up her nose evoked great emotion in me. I knew it was helping her and yet, all I could think was ‘9 weeks ago, you were still inside me, still safe and now you can’t breathe adequately on your own’. I refused to leave her bedside because even though the feeling had eased I knew something was brewing, I kept saying it over and over in my head looking for some kind of relief ‘I knew it was coming, I wasn’t overreacting’ and yet it felt incomplete. I knew the worst was yet to come. So as her breathing became more ragged and I was awoken from my nap by her uncontrollable coughing, a noise that still rings in my ears, whilst it was horrendous to see it was not surprising to me. I watched her tiny body heave at the effort it was taking for her to take those quick shallow breaths, her head flopping backward in a way that signified defeat rather than immaturity. Her eyes red and puffy and her silent cry screaming in my ears. I will never forget the tears that uncontrollably streamed down my face, the overwhelming irrational urge to scream at my husband to do something to fix her. The nurses were gathered around her bed with a female consultant who was listening to her chest, they were prodding and poking her and I was stood in what felt like a very hot, very muffled bubble. Somewhere along the way I made an involuntary noise, I have no idea what it was, but it was enough to make one of the nurses ask me if I was ok. I don’t think I responded. I remember seeing my dad in the room and a nurse was telling me over and over that it would be ok but I couldn’t really hear her. I had known this was coming and yet I have never been more unprepared for anything in my entire life. I heard the consultant say that my daughter wasn’t moving any air and as I watched her tiny body struggle a feeling like no other trickled through my veins and in that moment I thought my child was going to die.

I tried to prepare myself for the inevitable blow that would cause irreversible damage to me physically and mentally. As all the commotion was going on around me, as my Dad told me to move out of the way so the doctors could work and as my husband stood next to me with a harrowed look of shock etched deep into his brown eyes I felt myself begin to fall. I began to fall into the black pit that houses parents who have lost a child. I became very hot and entirely fixated on the small green numbers that displayed on the monitor she was hooked up to. They had to stay above 92%, her heartrate was raging out of control but with 100% oxygen being blasted into her, her little body still had enough in it to keep working. Through the loud humming I could hear I clung to that piece of information and yet I knew I was falling, falling uncontrollably into the pit when the following things happened in quick succession:

· A large team of anaesthetists entered the room and took over. They calmly planned how to move my daughter to theatre in order to intubate her. They were going to take control of her breathing.

· A nurse placed a hand on my shoulder and passed me a tissue and I remember looking at her in blind panic.

· After a brief discussion and a practice run through they began to move my daughter, I followed behind in my slippers, crying and generally being utterly useless.

· We walked along corridors that I can’t even describe to you; I took nothing in except for the whereabouts of my daughter and those little green numbers.

·An unassuming man with a beard sloped up next to me with a slow walk and introduced himself as one of the anaesthetists. I had no interest in talking to him but I vaguely remember nodding in acknowledgement.

·A short while later we went into theatre and our daughter lay with tape over her eyes and tubes down her throat.

·The unassuming man with the beard was in the room. He was the guy in charge and he was squeezing a little green bag in his hand that was connected to my daughter’s ventilator tube. This man breathed for her, manually, for three hours. This man is my hero.

·A highly skilled team drove to Buckinghamshire from Southampton. An extraordinary team of people, a sister who was not much older than me, an ambulance driver who had earrings and was covered in tattoos but who went about his duty with the utmost care and attention, and a doctor who was so calm and exuded such an understanding of the entire situation that he made me carry on breathing. These people bought with them a trolley which contained a baby pod, a pod for my daughter to travel in that looked like a spaceship. They worked on her until she was safe to transport and the tattooed ambulance driver with the earrings got us to the John Radcliffe Paediatric intensive care unit in 24 minutes. This is a journey that normally takes 50 minutes.

·We entered the intensive care unit through the back door and a nurse spotted my soaking wet slippers and my general air of insanity and stuff just began to happen. Our daughter was hooked up to paediatric specific machines that would maintain her life until she was strong enough to go it alone. A consultant told me he expected her to make a full recovery from this although, at the time, I couldn’t see how. A nurse took me to the Parent’s room and gave me a pair of socks and after a short while I was invited to go and see my daughter.

Standing in that paediatric intensive care unit I waited for my husband who arrived very quickly. I stood in red hospital socks next to my daughter’s bed and activity whirred around me. My ears were still humming and I still felt like I was falling but as my daughter’s monitors beeped confirming she was alive and as a room key was pushed gently into my hand and a parking permit folded neatly and passed to my husband the overwhelming feeling of falling seemed to rush all at once and I found myself again, bracing for impact. I held my breath as I realised that the impact wasn’t going to come, I stared around the room at the small nurse who I would later name ‘Kate the Great’ at the consultant - James - who would be my main source of comfort over the coming days, at the key to the free accommodation in my hand, at the red socks that were warming my feet, at the intricately skilled, highly trained, underappreciated room of absolute heroes around me and I realised, for the first time since this chaos had started that the impact at the end of my fall was not coming and instead, I bounced. And I didn’t just bounce a little bit, I bounced high. As I had been falling into the darkness our country’s NHS had interwoven its arms underneath me and braced and as I prepared for impact what happened instead was that I bounced on this web of extraordinary people. The consultants gripped the nurses, the nurses gripped the machines designed by the many talented engineers that would keep my daughter alive, the medicines developed by the pharmacists were distributed appropriately, the cleaners kept my daughter’s bed space clean, the McDonalds charity housed us, free of charge for our entire 9 day stay, Greggs and Pret a Manger gave parents with sick children free food. The web that had been spinning underneath me whilst I had been falling was far wider than I realised in that moment. Our NHS is an intricate, extraordinary web and each strand of the web can only work with all the other strands. Had even one part of the web been missing, had the ward nurses not raised the alarm, had the consultant not called the anaesthetist, had the anaesthetists not intubated, had the transfer team not been so meticulous, had the PICU not been run the way it had, had the cleaners not cleaned the space adequately, had the charity not housed us, had Greggs and Pret not fed us, had even one of these aspects of the web not worked properly I would have fallen through it.

I have never before seen the NHS at its full potential. I am sure there are many branches of this web that I still have no comprehension of. People like to moan about our NHS, they like to lament that they had to wait in A&E, they like to whinge that the doctor didn’t immediately do what the layman felt was necessary but let me tell you this: when you are falling into a black space from which there is no return, when you think you are watching your daughter die in front of you and ‘the system’ kicks in it is nothing short of exponentially fantastic; an intricate machine that ticks over to the general public but that smashes through every boundary when you are desperately in your hour of need. In my eyes, the employees of the NHS are not paid enough, are not thanked enough and are not recognised enough. I will never forget the names and faces of every person who helped my daughter to stay alive.

I will never forget what it felt like to think you are falling into a hole from which you will never be able to return.

And I will never forget what it feels like to bounce.

Written by Christina Juniper – December 2017