Ffion was born in the arms of an angel on April 1st 2015, she had Edwards Syndrome. I'd had a relatively normal pregnancy, up until my 20 weeks scan, I was having a healthy baby. At my twenty week scan, the sonographer picked up a few issues and called later that evening asking me to see a consultant. After another scan, I was asked to see a different consultant for a second opinion and at that third appointment was I then told that it was thought that my baby had Edwards Syndrome. I hadn't heard of this before and the midwives weren't really telling me a lot, so I went home and googled. What I discovered was horrifying. To find out that there was a condition existing that I didn't have a clue about, that the outcome wasn't positive and that this condition is the second most common chromosome disorder to Downs Syndrome was shocking. I had had to have an amniocentesis to confirm what the Dr's thought. Monday 30th March, my worst fears were confirmed. My baby had full Edwards Syndrome. My partner and I had decided in this time that we were not going to continue with the pregnancy, as it was unfair on us and our unborn child to prolong the inevitable. Two days later, Wednesday 1st March, after a long and agonising labour, I gave birth to the most beautiful sleeping baby girl. We named her Ffion Irene. She was a tiny 11 ounces and looked absolutely perfect. The next few weeks were awful. Nobody expects to plan their child's funeral, it's not how life is meant to work. In memory of my daughter, myself, family and friends have decided to create a charity to raise awareness of this awful condition, Edwards Syndrome. One of the worst things for us at the time was that nobody knew a thing about Edwards Syndrome. Secondly, we will be raising money to be able to subsidise private pre-natal testing (the NIFTY) to expectant Mum's that have previously experienced an Edwards tragedy. This means that Mum's will be able to know from 10 weeks and they won't have to have invasive testing such as an amniocentesis, which carries a risk of miscarriage. NIFTY screening is available privately in South Wales and can cost up to £450. Our aim is to raise money to be able to subsidise £100 towards this test. I've worked with Antenatal Screening Wales to have non-invasive prenatal testing (NIPT) introduced on the NHS throughout Wales, but it won't be offered to all Mum's or Mum's that have previously suffered a loss. There are certain criteria that an expectant Mum needs to meet before NIPT will be offered to her. Which is why we still offer the subsidy for private screening, as it can be done far earlier than if it was offered on the NHS. Please feel free to contact me if you would like to know more, email us at [email protected]
