Twenty weeks into my trouble-free pregnancy a small VSD (ventricular septal defect) was found. This was monitored closely up until delivery. Our cardiologist was not concerned about it, so of course we expected a healthy baby. Bella was born on 13 July 2006. Immediately after birth Bella turned blue and stopped breathing, she was taken to ICU for observation and was returned to me on the ward that afternoon, but within minutes was taken back to ICU as she had turned blue again and was not breathing.

Bella spent the next 6 weeks to and from ICU and special care. Numerous investigations began as she had very poor feeding and no weight gain. With no answers and no indication of what was happening we took our baby home. The next few weeks were a blur. Her feeding continued to be a concern to me and my husband. We had numerous visits to the Paediatrician and GP, only to be told "this is common, offer her a bottle". After a week of keeping a diary of the times and amounts she was drinking I knew things we not right. We presented to DEM at the Royal Childrens Hospital. A nasogastric tube went in and our journey began. Again multiple tests were done, still with no answers. Home we then went with our "Tube feed baby". The next four months we presented to DEM almost everyday having the NGT replaced, as Bella did not tolerate her feeds she would vomit it up, as well as many other infections and concerns.

In November Bella developed a viral infection and was intubated. She was in and out of PICU for many weeks. Here a decision was made for her to have a Gastrostomy button inserted. Finally she began to gain weight. Bella's development was very delayed, she still had no head control, was motionless and made no eye contact, plagiocephaly (flat head), Tracheo Laryngomalacia and enlarged ventricals. We now began the routine and schedule of various therapies including speech, OT, and Physio. By the time Bella was 11 months old, Greg and I were at rock bottom, still no answers to what was happening to our daughter. It was then we heard about Xavier. I rang one morning in desperation and said "Can you please help us?" Within two weeks we were accepted and our fantastic carers and support worker joined our family. As my family live in Sydney, we had no immediate help, or anyone to lend a hand. We could not believe how lucky we were.

Month by month Bella's development improved. Whilst at conductive education at Geebung Special school in May last year she picked up a Jatz biscuit and put in her mouth. I just cried, as up until then she received all her nutrition via her button. It looked like persisting with Speech Therapy was working. Over the months her oral feeding improved dramatically. Almost all her nutrition is given orally (pureed with small amounts of texture and spaghetti Oops). She still receives all fluids via her button, and is still supplemented once a day and overnight with pediasure.

She is a delightful little girl who loves to bottom shuffle around with her handbag and Baby Born and swing her arms to the Night Garden. She is still not able to walk or stand independently, but her Makaton and verbal communication is improving every day. Her VSD is being reviewed with possible surgery in the future.

Our schedule, like any family with a Special Child, is demanding with therapies and appointments. Bella still has a long way to go. We are not actively looking for a diagnosis, all the medical staff can tell us is that Bella is “Globally Delayed". Without the fantastic support and help from all at Xavier, we as a family would have found the last few years very difficult.

Cathy Maguire.