Posted on March 28, 2014
On February 26th we finally returned to the Evelina to meet Edward’s medical team to discuss why he died and ask any questions about his treatment. Readers of my previous blogs will know how big a block this has been, to balance the need for a rational conversation about Edward’s death with an overwhelming desire to blame somebody for it. For 7 months I refused to go, scared that I might not show the dignity, composure and courage required.
We drove the two and half hours to London, painfully aware that the last time we had made this journey Edward had sat in the back chatting away to us, all of us nervous but full of hope for the next stage of his life. We had talked about what we would do together as a family when it was all over and how everything would soon be fine.
We arrived at lunchtime and went the same canteen that we had eaten at so many times during Edward’s stay. It just felt like the right thing to do. Afterwards we walked across to The Evelina, our first time back since leaving Edward’s body there the morning he passed away.
We were confronted by a reception full of children and parents, just as it always is during any given week day. Some no doubt very sick and facing life saving operations, just like Edward, all those months ago. Any fear and anger I had melted away. The hopes and fears of other families, at the beginning of a journey that you once took, is a great leveller. How could I be angry at a place that will bring so much joy to many of them? Of course, some will join us in the tragedy of loss, but the majority will not and, despite our fate, it has to be about the greater good.
We made our way to see our counsellor, Mollie, at Gassiott House where we had stayed several times before for Edward’s pre-op procedures and scans. We had a quick chat and then waited for Edward’s surgeon, Mr Conal Austin, and head consultant, Dr Thomas Krauseman, to arrive. I had rehearsed this moment in my mind a hundred times. I knew exactly what I wanted to say but as soon as I opened my mouth I started to cry. Over the course of the next couple of hours there were plenty more tears from both of us but we were able to ask our questions and hear what they had to say.
We learned that Edward’s fontan operation had been a success. A success. Yes, you read that right. But a success that ended in his death and, we are told, the first and only one of its kind at the Evelina. Post-op his heart was functioning properly and all his blood pressures were fine. It was a routine operation with a text book outcome. But something else went wrong – they couldn’t stem his fluid loss. It should have stopped naturally after a week to ten days but he was still draining heavily in week 3. Even now, they don’t know why. There were no other classic rejection signs. They did all the checks, and tried every trick to stem the flow but nothing worked. All the while he got weaker and weaker. An infection became more likely with every day those drains stayed in his body but nobody knew that when it came, it would be something so virulent as sepsis and cause him so much pain. In my last blog I wrote about how this has tormented me. Could they have done more? If they knew that there was a risk of infection would a simple dose of pre-emptive antibiotics have prevented it? If so, why didn’t they give him some?
But I also know that sepsis is notoriously hard to diagnose and usually shows itself when it is already well advanced. And it likes to kill people, over 30,000 every year in the UK, mostly adults. What chance a four year old boy with half a heart? The consensus at the time was that it was a nasty case of constipation when in reality it was a bacteria called staphylococcus aureus wreaking havoc inside him. We had no reason to doubt them and I accept that they were doing their best but the pain he suffered during those three days will haunt me forever. It is the closest thing to unbearable that any parent can surely face. Your child, racked with pain, shaking, confused, and scared. By the time he was taken down to theatre to put in a central line, the sepsis was in full throttle. His face as he looked at us as they wheeled him away is etched in my memory. It was the last fully conscious communication we ever shared with him. He died 9 days later.
Some of you will recall that this procedure itself was delayed several times. I cannot hand on heart say that I am comfortable with this but there is nothing I can do about it now. I accept the vulnerability of human judgement but it’s hard when the casualty is your child. A decision was made to delay it on the basis that he was not sick enough. Three times. The first because the consultant required to do the job had finished his shift, the second due to another child’s emergency and the third, who knows? We have never been given an explanation. But by this time we were so desperately worried about him that we focused on comforting him and nothing else, leaving the treatment to the experts. They made a mis-judgement, albeit a human one given that they didn’t know he had sepsis, but it was and always will be the wrong call to have made. I can still remember now, a young doctor whose name I will not reveal, telling us that it simply wasn’t good enough that the delay had been postponed so many times. She was the only doctor to send us a condolence card. We simply have no choice but to live with it. Circumstance, bad luck, life. However much I rage against it I will never be able to change what happened.
I am not implying negligence, although I must admit that during my darkest moments I have often thought about it. Edward’s case is very different to the recent experience of other heart families at Bristol Children’s Hospital (which certainly has a case to answer) and it’s insulting to them to compare our experience to theirs. I know some of them read this blog, and I want to reiterate how often I think of them. I have to acknowledge that part of me is desperately searching for somebody to blame for doing this to our beautiful and helpless little boy when there is probably nobody to blame. I have, in turns, blamed the doctors and myself for not spotting the infection but in my heart I know that nobody did anything other than their best. But our best just wasn’t good enough this time. In addition, there is no way of knowing whether the outcome would have been different and we have been told that, even with the advantage of hindsight, the doctors would not have done anything differently. Even so, would they admit this to us if they felt otherwise?
Acceptance is the only path that I can take. I have to work hard every day to remind myself that whatever I feel and however I rage and cry the outcome never changes. I have screamed, punched walls and cried until my voice has gone hoarse and my eyes have run dry. But when I stop Edward is still dead. The rage solves nothing.
My wife continues to amaze me with her composure and grace. Unbeknown to me, she had written letters to both Mr Austin and Dr Krauseman and other doctors who weren’t able to come, just in case she was unable to express herself during the meeting. In them were just words of thanks for everything they did for Edward. Of course, being the superstar she is, she was able to say everything she wanted as elegantly and as heartfelt as always. She has still not read a single word of any of my posts and is far more accepting of that delay and does not consider anything other than the very best was done for our son. I hope dearly that I too one day will be able to feel the same way. In my heart I believe that she is right but I need to get there on my own terms. I also have a duty as her husband never to make her doubt how she feels.
Despite what I have said, I want both Mr Austin and Dr Krauseman to know that I too hold both of them and their colleagues in the highest regard. These are the most dedicated and selfless of people who did everything they thought was right to save Edward and will do so again and again for countless other families. Without them, Edward would have died shortly after birth, and we would never had four and half wonderful years. How can we not be grateful for this most beautiful of gifts, no matter how short lived? As that old fellow Dr Seuss said, ‘Don’t cry that it’s over. Smile that it ever happened.’ I say this to myself every day.
After Mr Austin and Dr Krauseman finished, something genuinely lovely happened. Three of the nurses – Nicky, Sam and Jason – came to see us. This meant the world to us. The parent-nurse relationship is very different to the one that exists between parent and doctor. You get to talk to them and spend so much more time together as they tend to both your child’s needs and your emotional journey during their relentless 12 hour shifts. They are true superstars. We got to know so many more – Jo, Francesca (who came to the funeral), Emily – to name just a few. If any of you are reading this, you helped us during the very worst moments of our lives and gave us the strength we needed to provide our son with all our love as we shepherded him out of this world. We will never, ever, forget you.
At the end Mollie gave us a beautiful cast of Edward’s hands and feet that we had asked to be made the day he died. I wasn’t sure about it at the time but I am so glad now that we did. I know this sounds silly, but they are so clearly his hand and foot, the former so distinctive with his little fingers and club thumb (a common trait of children with serious heart conditions) and the latter so delicate. He had such perfect little feet and a dainty little walk.
After that, we had two more things to do. First was to visit the hospital chapel. I’ve been asked about religion a lot in the wake of Edward’s death. I have a complex and unorthodox relationship with all organised religions but I do believe in a kind of karma. The last time I had been in the chapel was just before Edward died and I was very, very angry with the world and said some terrible things. So I went in to make my peace, irrespective of what I do and don’t believe. It was the right thing to do. Even now, I visit our local church almost every day to light his candle and it’s a place of immense comfort, no matter what.
The second thing was to walk to the river front, to see that view of the Thames and the Houses of Parliament, once again but for the first time without Edward. It had always been a comforting sight, to feel that we were in one of the best hospitals in the world next to one of its most famous rivers and such a historic building. We had sat by it through every operation, even the last ditch emergency procedure the day before he died. And to be fair, he survived every one of them. Just that damn infection. The Thames, like all great rivers, is a metaphor for life. It brings life and death, but it keeps on going, and we must do that too. For our children, our family, our friends and, above all, Edward.
The next day I was very, very down. The reason was simple. We had both felt that, somehow, Edward had been with us that day. He had been the subject of every conversation, the source of both tears and laughter, and it made it feel like he was there with us in the room, playing between the chairs whilst we talked to the doctors and nurses. The sun was out, the sky was blue and it felt like he was happy. But the next day he was gone again and I couldn’t find him no matter how hard I looked. It felt awful.
I want to emphasise though that we are ok. The last thing I am looking for is people to feel sorry for us. If there is anything here for you, let it be the knowledge that life goes on and that you can survive if something terrible happens to you. You are stronger than you know. Life is just different now. It’s all relative. I suspect that these posts can sound morose or self-pitying but that is not their intention. They are an honest account of how I feel. It’s not a case of moving on but getting on with what has happened and can never be changed. There is sadness, but there is also a deeper appreciation of life, and of our friends and family whose love and support has been wonderful. We are, despite it all, lucky to have what we have and to have loved and lost one of the most special children that ever set foot on this planet. I am biased of course, but you will never convince me, or any other bereaved parent, otherwise.
Let me end with two true stories about Arthur that have provided some comfort. Firstly, a few weeks ago, I spent the day with him at Warwick Castle whilst Clare and Alice went to Stratford to see Peter Pan. Both Clare and I felt that Alice would benefit from this new telling of the famous tale that focuses on Wendy’s relationship with Peter, her brother who had died and would never grow up. We thought that it would be too much for Arthur so I took him for a boys’ day out instead. It was a beautiful sunny day (as it always seems to be on Edward’s occasions) and at one point I turned to Arthur and said, “Sweetheart, you know Edward would have loved it here.” “But he is here”, he replied. “How do you know?” I asked. “Because he’s holding my hand.” I knelt down and asked, “How do you know he’s holding your hand?”, to which he said simply, “Because every time he does my hand feels warm.”
Some days earlier, Arthur had casually said to me that he had only once ever dreamt of Edward. We talk about him every day so it’s not something that worries me. In fact, Arthur will often very proudly say that although he cried on that first day when he found out he hasn’t felt the need to do so since. Maybe we now know why. Anyway, he told me that he dreamt of Edward a few days after he died, wearing his favourite red fleece, standing silently in a circle of light with all the colours of the rainbow around him. He went off and drew me a picture. It’s lovely and I have have posted it below.
Who am I to question a four year old boy who has no preconceptions about life or what happens after death? I think perhaps that children have a lot to teach us.
(If you haven’t done already and would like to make a donation to Edward’s memorial fund for Little Hearts Matter, please do so here. Every penny raised goes to helping other children and their families affected by congenital heart disease. Thank you.)