Retracing My Steps

I wrote recently about the Facebook post by my friend, a nurse, featuring a video I found deeply moving. It followed a young woman making a visit to the hospital where she and her son were treated following a terrible car accident that killed her husband. She and her baby son survived and she made the journey ten years later to thank all the medical professionals who had saved her son’s life.

I have thought endlessly about this film ever since I first saw it as it speaks to me on so many levels.

Ever since Thursday 17th July 2014 when for the first time in my life I called 999 and asked for an ambulance, my mind has replayed the sequence of events that followed with exhausting repetitiveness. This is a symptom of Post Traumatic Stress Disorder, or PTSD; the same condition which means that I am now extremely nervous of setting foot in hospitals; in particular, the two we visited with Romy. We had occasion to do this just after she died. I have written about the first visit already: D and I, deep in shock, tried to visit the Royal Alexandra Children’s Hospital A&E Department the day after she died, intending to thank the team who had worked so hard for us. It was an intensely upsetting experience for us both and the sheer force of what we felt as we set foot in the building knocked us sideways.

Then, on the Monday following Romy’s death we returned to King’s College Hospital in London to sit with Romy, bathe her, brush her hair, dress her in her own clothes and be together with her. We were confused as to where we should go in order to be taken to her and in a bit of a daze, we found our way back to the Paediatric Intensive Care Unit we had left just days before. I had entered that unit with our daughter and left it with empty arms – a feeling of such utter devastation and horror that recalling it now, almost two years later, still feels just as raw. As we approached the PICU from down the corridor I was shocked to find myself suddenly gasping for breath. My knees gave way under me, I grabbed for my husband and clung to him as the shock hit me in waves. Once we reached the door I caught sight of the entrance door to the room in which we had last held our beloved daughter. The room she died in. At this point I honestly thought I could just curl up and die. It was a mind numbing experience and I swore that I would never set foot in that place again.

On bad days, a particularly upsetting yet random recurring image for me is of the outside of King’s College Hospital, with its many reflective windows. I remember staring up at those windows as our friend’s car pulled out of the car park, feeling as if my insides had been ripped out, knowing that my baby girl was still in that building. In the morgue. We called PICU the following day to ask them a question and were privileged to be able to speak to Kat, the nurse who had been with us after Romy’s final moments and had treated us, and Romy, with such loving care and respect. I will never forget this nurse. My own sister is a nurse – and an excellent one – so I know what I’m talking about here when I say that Kat was some kind of angel on earth. She took time to take our phone call and what she told us rendered me speechless. She wanted us to know that after we had left the hospital and she continued her duty of care to Romy, rather than allow the hospital porter to wheel her to the morgue, covered on a gurney, she had personally wrapped her in a blanket and carried her all the way there in her arms. Even now, writing those words makes me weep with gratitude and relief.

Having consequently – and quite by accident – walked from PICU to the hospital mortuary that Monday I can tell you that this is not a short journey; it’s a pretty complex one down lots of rabbit warren corridors and through many doors. This incredible woman carried our daughter all the way through those doors and delivered her safely into the hands of a fellow worker.

Kat is just one example of the many, many medical professionals we met over those dreadful 48 hours. Joe, the paramedic who drove Romy and I from our home to the Royal Alex is another. Despite it not really being permitted for anyone other than a paramedic to travel in the front of an ambulance, he understood my desperate need to be in the same vehicle as Romy rather than following behind in our neighbour’s car. There was no room in the back because they had sent the maximum number of team members to help us. I had made a panicked call to D telling him to get to the hospital immediately but he was in London so faced a train journey back to Brighton and then a taxi to the hospital. My mum was already on her way to us by train to pick up our older children and my sister was an hour and a half away. I was on my own. Joe broke this rule for me and it was a huge kindness. While driving, he gave me his own water to drink and, to my bafflement at the time, offered me a jaffa cake. I even managed to crack a joke about him offering everyone who rode in his ambulance a snack. He gave me that jaffa cake because my adrenaline was sky high, I had entered massive shock and he knew that having some sugar would take the edge off it. As we approached the Children’s A&E department he took the time to explain to me, very gently, that I was about to walk into a very shocking scene. That there would be a lot of people there to greet us (D counted 15 professionals in the room at one point) and that they might seem dismissive or terse but that this is because they were entirely focussed on their job; the job of working out what was wrong with our daughter and doing their level best to help her.

To this day, every time I see or hear an ambulance driving the route to that hospital near where we live I always look in the front to see whether it might be Joe driving. I think about these people a lot. I wonder whether they know how much I think about them, how grateful I am for how much they cared.

Our neighbour and friend had driven behind the ambulance to accompany me to hospital and sat in reception to wait for news. While she was there, the ambulance crew arrived and began a debrief with another senior member of staff. An ex intensive care nurse herself, our friend paid attention to what was being said and told me later that the entire team had appeared very anxious and worried, desperate for reassurance that they had done absolutely everything they could for Romy; bewildered as to what was wrong with her and how they could help to fix it.

A registrar at King’s told us that one of that team from Brighton did something they had hardly ever known before; they called King’s later that evening to ask about Romy.  Another registrar gave us her personal number, told us that she had a good friend living in Brighton and said that if ever we wanted to talk about what had happened while Romy was in their care she would gladly meet us while visiting her friend and talk for as long as we wanted.

That Friday afternoon, another senior member of staff accompanied Romy into the room with us and began the process of instructing her staff to shut down the machinery keeping our daughter alive. She had struck me as being particularly efficient and professional to the point of seeming unemotional. As I held Romy’s hand and sobbed uncontrollably, I became aware that this woman had put her arm around me to console me and that she was also crying.

The amazing neurosurgeon who spent so much time with us happened to bump into D when he retuned to the hospital some weeks later to process some paperwork. He remembered my husband, and our daughter. Incredibly, he remembered her by name.

After Romy had gone, we were offered a post mortem. We declined. Apart from the fact that I couldn’t bear to think of that procedure being carried out on my child without it being blatantly necessary, there was another reason. Neither of us needed answers. We weren’t angry – that would come later, but it wouldn’t be directed at those medical professionals – we didn’t need to apportion blame or find out what had happened and why. As far as we were, and still are, concerned, there are reasons beyond our knowledge and comprehension as to why our daughter could not stay with us. The people who looked after her in both hospitals are highly trained and experienced individuals but they are human beings too. They worry that they’re not making the right call. They work incredibly long hours. They try every which way to improve, lengthen and save lives. They are people, not God, or an invincible higher power. As the anaesthetist at the Royal Alex remarked, many of them have children too.

Going back to that Facebook video, I realise that there was a happy ending to that story which we do not have. Thankfully, the baby in that car accident survived and his mother did a wonderful thing in returning to that hospital, tracking down the team involved in helping her son, and personally thanking them. That really touched me as hardly a week goes by without my wondering where those people in our story are.

Recently, tired of struggling with my various PTSD triggers, I thought of that video again and thought what a good incentive it would be for me to start to get to grips with this condition if I made a commitment to retrace my steps to both those hospitals to thank the people who cared for Romy. This is not an easy undertaking for me, which is why I’ve added another dimension to it which requires some help from our friends and possibly even some strangers too.

I have set myself the intention of returning to both the Royal Alexandra Children’s Hospital in Brighton and to King’s College Hospital in London to thank as many of those individuals as possible in person. To really motivate myself, I would very much like to take along a donation to each hospital in Romy’s memory.

I realise that half of Facebook is alive with requests for donations for so many worthy causes. I realise that many bereaved parents find a great deal of solace in fundraising for the hospitals dear to their families’ hearts, and in taking up challenges to push themselves, to push through their grief, in memory of their children. For some reason, this hasn’t felt like a path I have wanted to take. Thanks to all those incredible fundraising individuals, amazing things are being achieved in hospitals all over the country with the help of others’ generosity in memory of some very special individuals who have touched lives.

However, I am asking now. I am asking you to please consider making a donation to either of the two JustGiving pages I have set up to help me with this challenge. Once I reach my target of £1000 per hospital I will travel to both hospitals to hand over the cheque in person. And I will film it for my blog and to post on Facebook. Apart from doing something in Romy’s memory, I would like to raise awareness of PTSD and how destructive and debilitating it can be. I would also like to show that it can be overcome.

Finally – and by no means least – by undertaking this challenge I would like to make the point that medical professionals of whatever status deserve our thanks. They deserve our gratitude even if our story does not have a happy ending; even if our child has died in their care. Because, notwithstanding the rare cases where negligence may be proven, these people care passionately about us and our children and go to extraordinary lengths to try and save their lives. Their devastation if they cannot do this is lasting.

If Romy were alive with our other children, I would teach her what I teach them. This includes the notion that anyone who has given of themselves is worthy of our thanks, and that life is much more rewarding if we live it with grace.

Absolutely no donation is too small. Please share far and wide for Romy. For PTSD sufferers everywhere. For all the unsung heroes in the medical profession who go to work every day and work so hard to save lives.