On Tuesday the 7th May 2013 at 18.45, me and my husband became the very proud parents of our 1st child, a beautiful baby girl. Ellie Grace Beaumont. She meant everything to us. Me and Ellie both had a rough 1st week, Ellie was jaundiced, whilst I lost a lot of blood during a difficult labour and ended up having to have 2 bloods transfusions the day after having her. I was very weak and unable to look after my baby the 1st night, I didn’t get much chance to hold her, or even give her the 1st very important feed. Things picked up after that, and we moved onto a ward 3 days later we were able to go home. This however was very short lived, we were back in hospital by the next morning, I had taken a turn for the worse again, and ended up having to have another 2 blood transfusions. We were still a bit concerned about Ellie’s jaundice, but after doing some tests, they said she was fine. She had however lost more than the liked 10% weight loss. Eventually, the hospital and I agreed I was well enough to come home, so on the Monday evening, we were back at home where we should be, ready to start being a family. We were so happy. For the next few days, life was good, tiring like it is with a new baby, sleepless nights etc, but we were loving it. Then Ellie stated to loose more weight, not a lot but she wasn’t putting it on like she should have done, the midwives weren’t worried. Then she stopped breast feeding, so through advice from our midwife, we started expressed bottle feeding. That went ok for a day, then she stopped wanting to feed altogether, didn’t want to be put down, only settled in our arms. On the Tuesday morning when dressing her i noticed that she was covered in a rash, every parents worse nightmare, we did the glass test and it disappeared, we were relieved, but not happy with the way she was acting, so we rang the midwife, she came to see us, she decided it would be best to send us to York hospital for some tests, just to be on the safe side. So just over a week after coming home we were on our way back to the hospital. We never expected the next 2 days to go the way it did. On getting to York hospital, we were asked lots of questions before they did a series of tests, Ellie was put on antibiotics straight away, 1st it was just suspected to be a virus. They did a lumbar puncture test, the results came back with meningitis…… we just couldn’t believe it. They did a CT scan and whilst we waited for the results, the doctors explained that Ellie would probably need to be on an antibiotic drip for 7-14 days, but should be ok, although she may end up with some disabilities, what disabilities they would be they wouldn’t know until she progressed. We got the results from the CT scan, York hospital were happy with the results. The rash Ellie had had, was nothing to do with the meningitis and cleared up a few hours after having the antibiotics going into her system. Ellie was stable through the rest of the Tuesday evening. My husband had to go home as they would only let 1 of us stay with her, so he left about 10 that evening. Not long after he had left, Ellie started to take a turn for the worse, she started struggling to breath, she was so weak as she hadn’t had any feeds at all that day. I felt so helpless and such a failure as a mum. They put a tube down her throat to open her airways up, that worked for a little bit, then she got weaker. They had to put her on a ventilator to help her breathe, they then told me that the care at York hospital stopped there as they don’t have an intensive care unit, so we were going to have to be transferred to Leeds general infirmary. So at 1am Wednesday morning, I rang my husband and he came back to the hospital. We had to wait for a special ambulance to transfer us, it needed to have all the special equipment in it to keep Ellie on her ventilator. Before we left they did a 2nd CT scan to send onto Leeds, 8 hours after the other scan. Eventually at 6am we were in the ambulance on the way to LGI with my husband following in the car. I still expected everything to be ok. How wrong were we. After getting to the hospital, the staff settled Ellie in, got her all wired up before we got to see her, she looked so helpless all wired up. She had 2 nurses who sat with her their whole shift, watching every machine, monitoring every little beep. Keeping her alive. Eventually the doctors came to see us, this was what we had been waiting for. We did not expect the outcome…… The 1st CT scan showed brain damage, the 2nd CT scan showed even more extensive brain damage, they had found out Ellie’s meningitis was 1 of 3 strains, Strep A, Strep B or pneumococcal. They told us it wasn’t looking good, but that the brain is a very clever thing, and even though some parts were very damaged, it may still re-route itself and put things right. The doctors were holding out for this. The doctors left us alone to digest the news, we were devastated. Our parents came to the hospital to be with us and support us. They were there for a good 4 hours, eventually they went and left us to it. No sooner had they left, the doctors came back to us and said Ellie had pneumococcal meningitis and septicaemia. This type was the most rare. She had also started having little mini fits. They said they would monitor her for the rest of the Wednesday, then do more tests on the Thursday. We were devastated, we started letting our family and friends know, our parents had only just left but they came back. We were all sat in shock, wondering how we had got to this. Me and my husband talked on the Wednesday about our options, what we would do if they asked us how we felt about turning off the ventilator, or raising a brain damaged baby. We decided it would be no life for our gorgeous girl, we didn’t want her to suffer and it would be no life for us. If it came to it, we made the very difficult and heart breaking decision that that is what we would do. The hospital sorted a room out for us to stop in, our parents left, after a lot of persuading we left Ellie in the nurses capable hands and went to get some well needed rest. On the Thursday morning we made our way back up to the ward to see Ellie, to see how she was doing what sort of night she’d had. I was so shocked when I saw her, up until then, considering how ill she was, she hadn’t looked it, until now that is. My poor baby girl, my heart was breaking. We spent all day sitting round her bedside only leaving her when doctors came to do more tests etc. Eventually it was time to talk to the doctors again…… this time it was even worse than before, they told us that they felt it was in Ellie’s best interest for the doctors to stop Ellie’s treatment, she was slipping away, there was nothing they could do, no way she could survive. We were loosing her. So we told them our decision. The hospital staff were fantastic, so supportive. They offered for us to have Ellie baptised, for us to be moved to a hospice to make things a little bit nicer for us than in the hospital. We kindly declined everything , nothing was going to make this any better or easier to deal with. The hospital moved us into a private room of our own, so we could spend some time with Ellie, without other babies and parents around us. We were able to take prints and clay moulds of Ellie’s foot and hand prints, she was washed by the nurses and we dressed her in one of our favourite outfits. We kept kissing her, talking to her telling her how much we loved her, how much everyone loved her, how special she was, how we would never forget her, how happy she had made me and her daddy, even if it was just for a short while. Eventually we decided we were ready to let her go, if you can ever decide your ready to loose your child. The nurses came back into the room, and carefully started removing all the tubes, then they placed Ellie in my arms as they turned the ventilator machines off. She held on for a good half an hour after, but eventually at 6.30 pm she passed away peacefully in my arms. She was just 16 days old. How were we ever going to survive without her, our baby girl, she was all we had ever wanted from getting together 3 years earlier. We then had to come home, to our house full of her things, with all the new baby cards still up, everything reminding us of her, smelling of her, waiting for her. We miss our gorgeous girl so much, we will never stop raising awareness for this horrible disease. It truely is devastating far too many lives lately.