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 hurdle this has been for me, to balance the need for a rational conversation about my son’s death with an overwhelming desire to blame somebody for it. For 7 months I simply refused to go – I was scared of how I would react and that I might not show the dignity, composure and courage that both my son and the doctors deserve.
As the day approached – coincidentally my Dad’s birthday – Clare and I were at polar opposites. She, so calm and poised normally, was unnerved and emotional whilst I, the one who had so stubbornly refused to go, was positive and upbeat. Weird.
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. A 95% success rate, remember, and the strongest, happiest and most resilient boy you could ever meet. We had talked about what we would do together as a family when it was all over and how everything would soon be fine. He never came home. Hard, hard memories.
We arrived at lunchtime and I insisted on going to the same canteen that we had eaten at so many times during Edward’s stay. I wasn’t sure that Clare would want to and said that I was happy to go alone but, as always, her courage held. It just felt like the right thing to do, to confront this whole trip, the mother of all my demons, face to face and on my terms. To be fair, lunch wasn’t that hard in the end but it was symbolic. Afterwards we walked across to The Evelina, something that Clare genuinely did want to do but I wasn’t so sure.
We were confronted by a reception full of children and parents, just as it always is during any given week day. Some were probably 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 mad 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 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 was that it was a nasty case of constipation when in reality it was a bacteria called staphylococcus aureus wreaking havoc inside him as the sepsis set in. 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, so 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. Yes, 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 for me the wrong call to have made. I can still remember now, a young doctor whose name I will not reveal, telling us herself 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, helpless and innocent 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?
One thing that has kept me going was to read about someone else’s misfortune, which in itself is a terrible thing to admit. But I guess solace comes in many forms and you need to grab it whenever you can. Some months ago a man died of an infection following, of all things, an excessive nail biting habit. When he was admitted they gave him a course of precautionary antibiotics but he still died of sepsis a few days later. This, on its own, is enough to show that a pre-emptive dose of antibiotics might not have worked. That said I want this post to stand for ever as testament to my abject dismay at that three day delay. I can forgive but I will never forget.
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. The best I can do now is to live my life for him, to be a better person and to make him proud.
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 I owe it to her to say publicly that she 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 do 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. She is right. It is I, and only I, that must deal with this.
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 indomitable 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. When we got home we showed it to Arthur who smiled and immediately reached his hand out to touch Edward’s. Like us, he knew that hand instinctively.
After that, we had two more things to do. First was to visit the hospital chapel. I get asked about religion a lot in the wake of Edward’s death. I have a very difficult and unorthodox relationship with all organised religions but I do have a deep belief in 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.
When my son died I did not discover God. I discovered goodness and love. Perhaps, underneath all the antiquated protocols and doctrines that I find so frustrating they are the same thing, who knows? But what I do know is that goodness and love require making peace with everyone and anything that I have clashed with throughout my life. Some of you will know personally that I have already begun this process and I apologise if it has made you uncomfortable. In the past week alone I have made amends with two people for events that happened over twenty years ago. Perhaps it’s over the top, and it has on occasion been very funny (watch My Name is Earl if you’re wondering why), but life is too short to bear grudges or to fill it with regrets.
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 one the day before he died. And to be fair, he survived every one of them. Just that damn infection. Yes it’s a cliche, but 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 me, for Clare, for our children, our family, our friends and, above all, Edward.
The next day, Clare and I once again swapped roles. She was up, and I was very, very down. The reason was simple. We had both felt that, somehow, Edward had been with us that day. The fact that he was the subject of every conversation, the source of both tears and laughter, made it feel that 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. I was inconsolable. Today, March 28th, is eight months to the day that he passed away. In two days it is Mother’s Day, and the day after that is Arthur’s and Edward’s fifth birthday. Together they probably present one of the toughest challenges that my wife has ever faced but we will pull together and look after her. That is what families are for.
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 but please understand that they are also about love. 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, which I hope will illustrate what I just said. 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 with Edward) 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 just a few days after he died, wearing his favourite red fleece, just standing silently in a field of light with all the colours of the rainbow behind him. He went off and drew me a picture. It’s no Michelangelo, but it’s beautiful and I have have posted it below.
Who am I to question a four year old boy who has no preconceptions about life or death? I think perhaps that children have a lot to teach us.
(If you’d like to read my original blog written whilst we were in hospital please visit click here. You can also find related posts under the category of ‘life’ using the filter option at the top left of the page)
(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.)