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DAY 10: 1 November:

Michelle: This was, without a doubt, the second worst day of my life. When we woke up Mike shouted down the passage to me that we had missed a call from the hospital in the night. My heart dropped. I checked my phone; no calls, no messages. His phone had been upstairs charging in the kitchen. The hospital had called him and left a message. Conor’s heart had given them some trouble during the night. Conor had a heart attack and had gone into heart failure. I remember screaming as Mike played the voice message to me. They had managed to stabilise him, but we needed to come to the hospital as soon as we could. We dashed to the hospital and I got to see him before the ward closed for the morning rounds. It was awful. He was sedated and hooked up to a ventilator. I couldn’t hold him, and I wanted to, so desperately.


Later that morning the NICU doctors to come and speak to us. They were amazing, and spent a long time explaining what had happened and what we can expect. They had called a paediatric cardiologist to come and have a look at Conor’s heart and we would take it from there. Waiting around was excruciating – we didn’t know how bad it was and what his chances of recovery were now. Minutes felt like hours.


The news was devastating. Conor had developed myocarditis (inflammation of the heart) as a result of the virus. It had attacked his heart, which was left with about one third of its functionality. He required specialised medical intervention, however the prognosis was not good. There was a 50/50 chance he would survive this, and if he did, his life would be dramatically different to the one we had envisioned for him. With our permission, they would move him to another hospital which had a specialist cardiac ICU where they could better manage and treat his condition. We gave our permission, and arrangements were put in place for him to be moved the following day.


My world shattered. A piece of my heart broke. I was numb and at the same time trying to quash the panic rising up that my son’s life was pretty much over, there was no hope. I spoke to my cousin, she told me there was always hope. And I clung onto that. And willed it to be enough.


Michael: Wake up 0330, Rachel vey unsettled. I get my phone that has been charging in the kitchen and see a message from the hospital. Oh oh. He has had a heart decompensation in the night. We rush to the Hospital, only Michelle allowed in. I go back home to make breakfast for Rachel. Trying to keep routine going. Change of shift at hospital and Michelle is asked to leave. We fetch her, sort out Rachel and drop her off at school before racing back to Hospital.


It is serious. They brought him back from the brink and stabilised him.

The paed comes in and bursts into tears, everybody is so emotionally involved. The Doc has a personal chat with us, using a Fishing boat captain analogy to describe what we should look out for. It helps.


A paediatric cardiologist comes to see him and tells us bluntly that it is not good. He is honest and doesn’t beat around the bush. Very little is known about the condition and we just have to see what happens. With neonates you just can’t tell, some get better some don’t. A real punch in the gut.


I focus on the positives, signs that it will get better. The doc who attended to him in the night had some cardio training. The paed had put in an extra line yesterday without connecting anything. That wouldn’t have been possible during the decomp. I hold on to that hope, there is nothing else I can do.


A huge party going on next door, DJ and people dancing on tables, but we are out in a blink, such an emotionally draining day.




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Conor James Foundation Trust 

IT000501/2018(G)

PBO number: 930065044

NPO number: 226-532

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