Seraphina was born by emergency section at only 25 weeks gestation and weighing a mere 760g. She fought hard, and after 4 and a half months in Special Care she came home. The stay was short lived however, as after only 3 days she suffered a massive aspiration and was rushed to Intensive Care with an aspiration Pneumonia.
It was there she was diagnosed with chronic Gastro-oesophageal Reflux. She was put on medication and fed by NJ tube but this didnâ€™t help and so she had a fundoplication operation and a tube inserted a few months later. It was also discovered she needed supplemental oxygen.
Since then, she has put on weight nicely and developmentally progressed well mentally, but a lot more slowly physically. She was diagnosed with Cerebral Palsy (spastic diplegic) just after she was one.
Things were fine until she was 18-21 months old when she stopped making progress and lost all her speech, she became withdrawn and avoided eye contact. She lost the ability to walk and then stand.
She was hospitalised for almost 3 months last November with a twisted bowel/bronchiolitis and Pneumonia. She ended up on a breathing machine over Christmas and New Year and once again we didnâ€™t know if she would pull through. However, she surprised us, and after emergency bowel surgery and a period on TPN she was able to come home.
She is in and out of hospital quite a bit with chest infections and bowel problems which is something she finds really frightening and she is on lots of medication (currently about 25 doses a day).
Recently we have found the reason for Seraphina's loss of skills. She has been diagnosed with Rett Syndrome - a horrible Genetic disorder which mainly affects girls. She cannot speak anymore but is beginning to communicate using eye-gaze and will let you know in no uncertain terms what she likes and dislikes. She also has a very infectious giggle and the most wonderful smile which lights up the room!