Rory was born by emergency c section 5 weeks early due to the cord being wrapped around his neck. When he was out doctors assured us he was ok and had a healthy weight of 4lbs His breathing was very quick so doctors put him on cpap for 3 days which seemed to settle him and after going through a few blood tests for low platelets, X rays and phototheropy for jaundice he was allowed to come home on 8th October The heath visitor was a bit worried about his weight gain and asked to add formula replace a breast feed which we did and the following week he had put on a decent amount of weight and she was happy. Then on 23rd October he had another good weight gain and was now 4lb 13 and health visitor was a lot happier. We didn't worry as my daughter also took a long time to gain weight and at 2 and half she is only 21lbs. Rory was such a character you knew when he was hungry he let everyone know. He would let anyone hold him and was very alert for such a tiny little man. Anyway on the morning of 25th we were going to catch the train to Leamington so gave him some formula to keep him settled for the journey. He did sleep all the way and woke up happy when we got there. He had some breast milk and enjoyed being passed around husband work mates everyone fell in love with him. When it was time to go Rory wanted more food. My husband Said it was a 5 minute walk away we can feed him there. He really screamed getting into the pushchair but soon settled when we started to move. We were just around the corner from the train station when my husband saw Rory's nose was bleeding, when he picked him up he wasn't breathing. I called an ambulance and out of no where came a child's nurse who offered to do CPR. What felt like ages the ambulance came and he was taken to hospital. When we got there we were taken into a room and a while later a doctor came in and said it took a further 15 minutes after getting to the hospital for his heart to start again, however it didn't look good. He was then taken to Birmingham Children's Hospital where he was cooled for 24 hours. He also had something called Cfam on which showed he was having seizures in his brain. These were sorted with medication and then 4 days later he had an MRI which showed very little damage to his brain just a small clot that wasn't stopping any blood and a small amount of swelling. This was positive and I really thought at this point Rory would recover from this nightmare. He had a swab done on his eyes, now before he stopped breathing I had taken him to doctors about his sticky eyes and they had also done swabs. The hospital came back saying he had pneumoccus and instantly tested his blood to see if it had spread, luckily it hadn't. The hospital phoned the doctors and the only swabs they did was for prematurity! On 6th November they tried taking him off the vent and he lasted 9 hours before he really struggled to breathe and he was put back on the vent. They did an X ray and found his left lung had completely collapsed and it was then they couldn't find a cough or a gag reflex and although his eyes were open and very bright he did not blink once. Rory had so many more tests on him that the doctors commented he had gone through all the tests they can do. These included a nerve and muscle test, a brainstem test, ECG and a pro longed EEG. All coming back normal. On 13th November he had another MRI this still showed very little damage and the doctors were confused they looked so closely at the scan trying to find something to explain why he was like he was. They finally sent both MRI scans to a woman at Kings Collage in London to look at them. On the morning of 22nd November we were told they had noticed a cough and gag reflex on suction over night we were so pleased. For the first time I allowed myself to eat breakfast. However that afternoon we were took into a room and told the woman had replied from London and very bluntly told "There was no hope for Rory" and "keeping him on the vent would be futile" All our family were called in and we all said goodbye to our tiny baby. On 23rd November at 1pm the vent was taken out and the sound that followed will haunt me forever, I held my tiny baby as he gasped for breathe. At quarter to 4 he took his last breathe and died in my arms. The doctor came in and confirmed there was no heartbeat. Our tiny beautiful baby was gone.