Wednesday 27th October, a day i will never ever forget. We had been staying in the Ronald McDonald house while Charlie was in Alder Hey and we headed over first thing as had become our routine. We knew the doctors would be coming to talk to us about the MRI results and we knew that those results would show us what we were dealing with. I think over that few days we’d talked about every possibility imaginable. How we could learn sign language if he was deaf and how we could adapt our house if he needed a wheelchair and every scenario inbetween. I kept telling them i could cope with anything as long as i got to take him home. We were told in the morning that the Consultant wanted to have a meeting with us at 1pm. It was torture waiting and although i feared the worst i still hoped for the best.
1pm came round eventually and in we went. We were taken into a room with a computer which had the MRI images on. The Consultant went through each image and each section of the brain with us. The light areas showed areas that were affected. Each area, each section was covered in these light patches. There wasn’t one part it hadn’t touched. After the first few screens it became a blur and i couldn’t listen to it anymore. I just broke down. He asked if i wanted him to carry on or stop for a bit but i told him to carry on. He showed us the brain stem which was also badly damaged. He said this could affect Charlie’s breathing and he might not be able to breathe on his own without a ventilator. We wouldn’t know unless we took him off.
We were taken into a room to sit by ourselves and take in all the information we’d been given. Needless to say we were devastated. It was the worst outcome but we still didn’t know exactly what it meant for Charlie on a day to day basis. We knew it was very severe brain damage but we didn’t know if there was anything he would be able to do.
Eventually we went back into Charlie’s room. A doctor came to see who had been wonderful with us. She always explained to us in more simple terms what the Consultant’s say because most of it was medical jargon. She came in and was blunt with us. His brain damage was so extensive he was unlikely to survive and if by some miracle he did survive his quality of life would be nil. It was blunt but we needed to hear the facts rather than hold on to any hope.
Later that evening we had another meeting with a different Consultant who gave us some more “brutal” straight talking. They were clear. They wouldn’t resuscitate him, the seizures he was having could be fatal and he could die at any time. The ventilator was keeping him alive as the breaths he was taking on his own weren’t sustainable. They couldn’t make the decision for us to turn the ventilator off but they made their position on it crystal clear. The decision was made that we would turn the ventilator off the following afternoon once our families had had chance to say their goodbyes.