Lane, Alysha Rhiannon

[left:42fb8a5639]http://www.cherubs-cdh.org/Album/new/lane-alyssa.jpg[/left:42fb8a5639]Hope you all had a lovely Christmas and we hope the New Year will be good for Cherubs and we are looking forward to your next newsletter. It was really encouraging last year when we received your newsletter and we have since written to several families, some have replied and some have not. I do think the 1st year is the worst and we are now more optimistic for the future with Alysha. Anyway here as promised is a brief outline of what happened to us. As you can see from this photo it was all worth it. At around 24 weeks I was sent for a scan as normal. It was on a Monday and they asked me to come back on Friday as they could not see all the baby. However the next day I saw my G.P. who said, you do know there is something wrong with your baby don't you. He then went on to explain it as best he could, and I was glad so at least when we went back to the hospital we were able to ask to be shown what the problem was. It was not until I was 37 weeks that we found and met the consultant who would take Alysha on. The hospital was 50 miles away, our local hospital just could not deal with it. I was booked in to be induced at 38 weeks. The labour and birth were normal and they went out of their way to make it as positive as possible. Alysha was born at 2.55 in the afternoon, she let out one cry as they whisked her away to be placed straight on a ventilator. We were overjoyed. It seemed like forever until they said we could go and see her, in the meantime I had been cuddling two tiny polaroid pictures. She was a reasonable weight at 6lb 7ozs. The first visit to the SCBU (special care baby unit) was so scary, seeing her for the first time covered in tubes and monitors. She was heavily sedated. On the 3rd day we decided to have her christened by the hospital chaplain it was just us and a couple of nurses, it was really weird, with what should have been a family time instead it was full of strangers. We had told all our family and friends about Alysha before he birth, so many people refrained from sending us cards because she was so ill. We found that really odd too because what happened in the next few hours, days or weeks. After 1 week she was said to be stable enough to go ahead with operation. So I had my first hold for about 3 minutes, still attached to the ventilator and other drips and monitors. We didn't get to hold her again for another 7 days. The op. went really well and her diaphragm was repaired using gortex. I honestly think that was the longest morning of our lives, wondering whether she would come back from theatre alive. She was ventilated for 2 more weeks after which she was able to breath on her own. At last we could pick her up properly. After 1 more week they said she could be transferred to our local hospital which was a big relief as we were traveling 100 miles every 2 days to see her. It was then only another week before they allowed her home. We tube fed Alysha for 9 and half months and she has had quite a few chest infections and we nebulise her four times a day more if she's poorly. But her smile and determination makes it more worthwhile, development is normal for her age although she will always be small she will not win the school reace, but to us she is just Alysha and she is special to us, so if your child has recently been diagnosed do not give up, it is a long uphill struggle at times, but it is worth it.

Written by Alysha’s mom, Brenda Lane (Great Britain)
1996