On Saturday in the mid afternoon, everything changed. Mummy and Daddy were called into a meeting room by the consultant team at NICU. During the meeting the Consultant stated that the preliminary test results had been received back and that they confirmed that I had Full Trisomy 18 (or Edwards Syndrome). As my parents didn’t really know what this meant, he explained that it was a life limiting genetic disorder and that my life expectancy was no more than a few months. He also said that it was likely to be down to nothing more than pure bad luck.
My parents were devastated. Having wanted a child so badly, they couldn’t believe that life could be so cruel. They cried and were confused. They had had a test which put them at very low risk of this happening. Nothing had been picked up on any scans. How on earth had this happened to them? There seemed to be no answers.
As Edwards Syndrome is so rare, the consultant team said they didn’t even have any literature on the disorder to give Mummy and Daddy to help them understand better.
Once they were composed my parents were taken to a different room where they faced the task of having to call my grandparents. They were not easy calls to make.
My Daddy also started to look up ‘Edwards Syndrome’ on the internet. When he read about the physical abnormalities it seemed that I had many of them, including:
• Heart defect/abnormality
• Large back portion to head
• Small jaw
• Over lapping fingers
• Low set ears
• Rocker bottom feet
Daddy also read that 1% of the children survived to the age of 10. He took heart from this. I had survived the pregnancy and survived the birth and so maybe I might prove the medics wrong again. It wasn’t impossible, was it?
Of course the biggest challenge I faced was my heart. It was confirmed that the abnormality was caused by my disorder, and my parents hoped that if I could survive the operation, perhaps I might have a fighting chance……………?