Hi My name is Claire and I wanted to share my story. Last year I gave birth to a beautiful baby boy named Alfie. He was born at 24 weeks and 5 days weighing a tiny 1lb 7oz. I had a placental abruption which resulted in him being delivered by emergency section on the 5th November 2013. At 10 days old Alfie had minor heart surgery to close his PDA valve and hopefully help him come off the ventilator. It was a rocky ride after his operation but he eventually started to breath independently at 25 days old. On the 5th December last year he deteriorated so quickly and had to be re-ventilated. By 10pm that night we were told Alfie was critically ill with Necrotising Enterocolitis, also known as NEC. He was to poorly to transfer and needed an operation to give him any chance of survival. On the 6th December at 9am we were told there was nothing more could be done for Alfie, his bowel had perforated and he was now on full support which was not helping him. We had to say good bye to our beautiful baby less then 24 hours after being told he had this awful illness. The reason Im sharing this story is because me and my husband made it out mission to raise awareness of this awful illness. We set up a charity called Just For Alfie and have raised thousands of pounds for the neonatal trust fund. As well as money we have supplied all local neonatal units with tiny premature clothing to supply to bereaved parents. When we lost Alfie he was a tiny 2lb 2oz and the ward had no clothes to fit him. This upset me deeply so I thought having clothes available would ease and already traumatic time. We have started a petition on change and we hope to get enough signatures to warrant a response from the government. The petition is just calling for a change of how NEC is handled, we are asking they provide leaflets to parents of premature babies and improve training offered to staff regarding the signs and symptoms of this dangerous illness. Early detection is vital and I feel by everyone being educated to the best of their ability will boost parents and medical staff ability to notice the signs at the very start and not when its too late. The link can be found on the Just For Alfie Facebook page and I hope some people can support us. I am currently pregnant again and I am 22 weeks now. We already have 2 beautiful girls and this will be our 3rd beautiful girl. Nothing will ever stop how hurt we feel but this little angel is giving us all a little bit of hope. I no Alfie is watching down on us all and I hope we are making him proud đź’™
Posted on: Sat, 15 Nov 2014 10:15:11 +0000
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