How I wish I was not writing this post. This is the ending that was never meant to be. From the day I started this blog and every day until Saturday, it never crossed my mind that we would leave The Evelina without Ned. How could we? The fontan procedure has a failure rate of less than 5%. Ned had flown through two far more difficult operations. This was the easy one. He was strong, defiant, unbeatable. Yes, there had been moments of incredible anxiety but he always responded. And yet, today, we are bereaved parents, consumed by grief and scarcely able to believe what has come to pass.
I have not written for a few days because I have not been able to. But, just as I used the blog before to help me deal with the emotions of Ned’s journey, I now need it more than ever. The only way I can deal with the sorrow is to talk about it. I won’t tell you about the grief, the guilt or the pain just yet but I will tell you what happened.
Despite having flirted with death twice in the preceding week, Ned had survived an even riskier open heart procedure on Friday night. Everything else had failed, and the surgeons felt that this was his only shot. He was still critical but, as the surgeon remarked, he was more stable than he was before he went in and his numbers were all up. John, Jenny, Clare and I were so happy that we celebrated with a quick trip to Pizza Express, convinced that, at last, we’d turned the corner. The medical team seemed happy too, and encouraged us to take advantage of this improvement and get some sleep. How desperately wrong we all were. That night became the only one he spent without one of us at his side. Only time knows if this will come to haunt me.
Bouyed by the apparent success of the operation, we arrived bright and early in PICU on Saturday morning. Del and Jodie, his two night nurses, told us that it had been a fraught night trying to keep his blood pressure up with fluids but we remained optimistic. After all, it wasn’t a new problem and it was only 12 hours since the operation. It wasn’t until we had a meeting with one of the lead consultants later in the morning that our world was shattered. Ian sat us all down by Ned’s bed, and armed with a series of diagrams proceeded to show us how his circulation was now looking. He explained that a larger hole had been made to alleviate something or other (I’m sorry, I can’t remember what) and I asked if the hole could be reduced once he recovered. “Yes”, replied Ian, “but I am afraid that he is not going to recover.” Ned’s inability to generate his own blood pressure could not be fixed. His ‘circuitry’, as they called it, was fatally flawed and nobody knew why. He was simply one of the very few for whom the fontan does not work. The sepsis had made everything much more difficult, but it had been an opportunist infection allowed in by his failing fontan. The only decision left to make was when to let him go.
How could this be? Sure, Ned’s blood pressure was low, but it was acceptable and he was still mentally astute, nodding or shaking his head to questions. Surely this was a good sign? But no, he only had blood pressure and brain function because of the inotropes being infused into him. “Why can’t we just keep giving these to him until his circuitry starts to work?”, I asked. Surely all he needed was time. This was Ned. He won’t die. He can’t die. Please?
Ian just shook his head and, to his eternal credit, cried. Nothing else needed to be said. All hope was gone.
Once again, we made phone calls to loved ones, but this time with the hardest message of all. It was time to come and say goodbye. One by one they came, on the saddest journey of a lifetime. As evening fell, the conversation turned to the hitherto unspeakable – how to let our son die. We’re his parents – we’re supposed to protect and nurture him. How could anyone ask us to do this?
But love, as we now know, comes in many guises, including the duty to make the most difficult of all choices. Do you keep your child on permanent life support in the vain hope of a miracle or let him go, free from suffering and pain? If we kept him going, were we fighting for him, or for us? Did he want to go on? Had he had enough? Had we already put him through too much? Was he angry with us? Had we caused him too much pain? If we turned off life support were we betraying him after the fight he had put up? Impossible questions.
But you only had to look at Ned’s physical condition to know what we should do. Severely swollen and bruised, he bore hardly any resemblance to the boy we knew. Our once, bright eyed, handsome boy was unrecognisable. Whereas before we had been able to overlook this in the belief that he would surely recover, it was now clear that this was the end. There could be no way back. He was aware and able to communicate with us through nodding and shaking his head but this was as heartbreaking as much as it was re-assuring. How could we possibly let him go when he could do this? But there was no hope. His heart and brain were only working because of the inotropes and the ventilator. Life was unsustainable. We had to let him go.
There was no rush they said. If we wanted to, we could sustain him for days even if only to be able to spend more time with him. Part of me wanted to do this but I knew it was forlorn and unfair on him. I also, deep down, desperately hoped that somehow his heart would keep going once we turned everything off, believing that he still had one more ace up his sleeve.
We agreed that we would withdraw the drugs and machines keeping him alive over the course of the night. First, no more fluid infusions, followed by disconnecting his dialysis machine, leaving only the inotropes to sustain him. In the meantime, the nurses brought in another bed to put next to his so that we could hold him and sleep with him, one of us on each side. We had not been able to hold him for weeks and held him like never before. We told him how much we loved him. We kissed him, held his hand, all the time reassuring him and telling him not to be scared. But we never said goodbye, because even now as I write, he is with us in our hearts and always will be. Our biggest fear was that he might, despite the morphine, still be in pain. I asked him twice during the night, and both times he was able to let us know that he was not. It was a huge relief, but also tragically bittersweet – a boy who could communicate, even at the very end whilst others discussed his death.
Ned’s mental astuteness presented another dilemma. We could, if we liked, ask him if he wanted to go on. Part of me wanted to do this, to let him go on his own terms but we were advised that the burden of choice needed to be ours. There was no way of asking a 4 year old boy about ending his life in a way that he would understand. By asking him if he want to ‘go’, it would be feasible for him to think he was going home, and that was just wrong. In the end, by withdrawing the inotropes, we were, in a way, leaving the decision to him or his body to try to respond. It was the only real option available to us. Of course I hoped his body would respond, but at least if it didn’t I knew that his own body had had the final word. It was completely and utterly heartbreaking.
Every now and then I would get up and walk to the parent’s room where John and Jenny, and my sister Fiona and her husband Steve, were keeping vigil, to let them know what was happening. At around midnight they came to see Ned for the final time, leaving Clare and I to spend the final few hours with him. By 2am, only the inotropes were still active and we discussed how and when to turn these off. Should they go one after the other to squeeze out some more precious time, or should they be withdrawn in one go, leaving him only a few minutes? It was surreal.
We decided to wait until dawn, to let him go as the sun rose and a new day began rather than in the darkness and sorrow of the night. It just felt more like Ned. Initially, we chose to withdraw the inotropes one by one, but soon changed our minds as Ned began to gasp ever so slightly for air. We knew it was only a physical response, but we could not bear to see him go like this and quickly informed Emily that it was time to withdraw them all. We knew that this would mean that the end was imminent.
A doctor arrived. The final inotropes were withdrawn and Ned was disconnected from the ventilator. The alarms on the monitors were turned off. We held him, caressed him, stroked his hair and loved him. I kissed him so many times. It was one of things we always used to do – I would kiss him again and again and he would say yuck. But this time, my beautiful boy responded by kissing my lips. It is a moment that I will cherish for the rest of my life. After all he had been through, he was still capable of love.
Love is the greatest lesson to me in all of this. It was Ned’s gift, to love and be loved, and its foundations to me are clear – they come from the family that John and Jenny have created, that stands as a model to all of us of how families should be, surrounded by and giving nothing but unconditional love and creating people like Clare, the most loving and capable of mothers. It’s a love that accommodates everything, from the sharing of joy to the closing of arms around you in the depths of despair. This is not to take away from any other family, including my own who I of course love deeply. My family has also shown me nothing other than unconditional love and support – my parents and sister have been wonderful – but anyone who knows the Austins will understand what I mean. They are one in a million.
The lines on his monitors become flatter and flatter. His blood pressure dropped, and his heart slowed. He opened his eyes briefly and a tiny breath escaped. I will aways believe that this was the moment his spirit left. I cannot explain why other than to say that something happened and he suddenly looked different. I turned to Clare and said, simply, “He’s gone.” Two minutes later, just before 5.30am, his heart stopped.
I don’t know how to express what follows adequately. Our desperation and sadness at losing our son was total, and yet his passing was so peaceful, even beautiful. It was a privilege and an honour to be there with him, to have brought him into this world, guided him through it and shepherded him out. Oh, how we wish that it had turned out differently. Our arms ache to hold him, our hearts are broken and we would give everything to have him back, but there was comfort in the manner of his passing.
The rest of the morning passed by in a blur. Plenty of tears and hugs with family, nurses and doctors. I cannot praise the staff at The Evelina enough. Their professionalism and dedication are incredible and there is no doubt that they did everything they could to save Ned. Yes, I will always wonder and torture myself that perhaps we didn’t realise quickly enough that something was terribly wrong, and that maybe an earlier intervention could have saved him, but we now know that it is likely that the die was cast from the moment the fontan operation was done. His body simply couldn’t take the new circulation and the sepsis took advantage. I just wish he hadn’t had to suffer so much. The final act was to bless Ned, and a lovely vicar stood with Clare and I around his bed, said some prayers and a few comforting words. By mid-afternoon, we were out of London and with family in Bristol breaking the terrible news to Alice and Arthur.
The journey was over. There is life before and life after you lose a child, and our world has changed forever.