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Conor James Foundation Trust 

IT000501/2018(G)

PBO number: 930065044

NPO number: 226-532

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DAY 20 – 11 November:

Michelle: Today things took a turn for the worse - the worst yet. Rachel, Mike and I had been hit, and hit hard, by a revolting tummy bug. We hadn’t been to see Conor as we didn’t want to add more challenges to him, or any other patient in the CTICU. But Conor was reaching the end of his road. The cardiologist had warned us that we would possibly need to start considering end of life plans for Conor if he didn’t start turning the corner soon. Something we couldn’t bear to think about. Something no parent should ever have to think about. I had asked if I could hold him in his final moments if we got to the point where treatment wasn’t working and had to stop. They said I could. But that was for another day.


Until we got the call at 6pm that we needed to rush to the hospital. When we got there, we were told that Conor’s condition had deteriorated and that his kidneys were failing. Their only option was to put him on extracorporeal membrane oxygenation (ECMO), which is life support, otherwise he wouldn’t make it through the night. There had been talk about putting him on ECMO earlier, but they wanted to see how he responded to the medications first, as after ECMO - which could only be given for a maximum of two weeks - there were no treatment options left. This was a last ditch attempt to save his life, as they had explained that ECMO was a bridge to transplant, and he had to be three years old, give or take, to receive a transplant, and it had to be a bi-lateral heart and lung transplant, and that there was slim to no chance of that happening as a) how would they get him from three weeks old to three years old, and b) there are practically no organs available for infants and babies who need them, for a number of reasons.


We signed consent for the ECMO and asked the surgeon to do whatever it took to save Conor. His prognosis was downgraded to 30% chance of survival. It’s unimaginable, and impossible to absorb that there is a 70% chance your baby will die. There were so many risks. He would receive Heparin to thin his blood to help it move through the ECMO machine, which carried a risk of bleeding out. Because he didn’t have an open chest (as is the case of many heart surgery patients who receive ECMO) the ECMO cannula would be placed in a vein in his neck. The precariousness of the placement also carried risk. He wouldn’t be able to move at all, and would likely develop bed sores. This was a fate too awful for words.

I can honestly say the love and support we received from friends and strangers during this time carried us through.


An amazing-beyond-words couple we had met in the corridors over the previous days sat with us in the waiting area while the surgeons performed the procedure. They kept us calm and distracted, showed us what the machine looked like in pictures of their son who had been on ECMO post-op, and had come off it successfully. They stayed for hours after the doors for visiting closed, until the surgeon came to tell us that Conor had survived the procedure and was stable.


Exhausted we stumbled home without seeing Conor as we were too worried about our tummy bug germs spreading to others. But oh, how I wanted to touch him and talk to him and tell him how brave he was and how much I loved him.


Michael: The is a distinct sound in the night, one that cannot be mistaken for anything else. A squishy, watery sound, accompanied by a loud UUURGH. Vomit. Rachel showed us her previous night’s dinner. Oh, and carrots, always carrots.


By morning it is our turn to join that party. Everybody is sick and we decide not to go to hospital in fear of passing whatever we have on. Try autopilot in zombie mode, while hugging the toilet. That is if you’re near a toilet. While entertaining Rachel outside, we each take a turn to experience our 0 Calorie diet, with twice the taste, in the nearest bush. Somewhere in-between we sleep.


Get a call at 6pm to come to the hospital. Everybody gets bundled into the car and we race to hospital. The doctors tell us his kidneys are failing from the meds, needs ECMO, 30% chance, hey we’ll take it.


A couple whose son was also in the CTICU come sit with us late into the night. Amazing how support can make a few tense hours seem easier. We are forever grateful to them. THANK YOU R&B, your kindness will never be forgotten!