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Family story Freddie Smith

Hearing our devastating diagnosis of Edwards Syndrome at 12 weeks changed our worlds forever. We didn't know that you could love and hurt so much at the same time for something that was so small and you hadn't yet met. But we did, Freddie was everything to us and we always said from the start as long as he wasn't suffering, we would continue our journey. He fought for us every step of the way so we fought back for him. 

All the research we did pointed towards the same outcome: it told us about the defects he might have, about how life limiting it can be and that, if he even made it to birth, we would be extremely lucky! We were broken and although we had a fantastic support network of family and friends and everyone was extremely sympathetic, nobody understood what we were going through. Nobody we knew had ever heard of Edwards Syndrome and we felt very alone.

At the hospital, we were told about SOFT UK and I soon became a member on the Facebook group. I started to read stories and could see that there were other people who had been through the same experience. I didn't always read the stories in full as, not knowing what my future was, it could be upsetting because we were only at the very start of our journey. However, there are some great survival stories too and that showed me that the research wasn't always right and we had something to hope for too. 

Soon a post appeared on FB, saying that there was going to be a Zoom call for new expectant parents. My husband and I were pretty sceptical about joining it, and we had no intention of talking, but we were hit by instant relief. We met other mums and couples who were going through the same thing. We were all at different stages of our pregnancy but all had the same questions, concerns and fears. This was a real lifeline for us and we felt so refreshed after the call that we were no longer alone.   

Freddie was a true fighter he was born at 38 weeks by planned c-section, on 19.11.21, weighing 4lb 4oz. He was perfect and beautiful. He was absolutely thriving and we had 2 days of complete and utter joy.

Suddenly, on the 2nd day, his breathing started to struggle and by 8pm that evening we were moved into SCBU where we tried several different oxygen supports for him but he just couldn’t keep up. He now looked like he was suffering, which was the one thing we would never want him to do. He couldn’t fight any more for us and we knew that it was time. It was the most heart breaking and soul destroying moment of our lives as we lay on the bed with him. At 5am on Monday 22nd Nov our baby was gone and grew his wings.

Even though what happened to us is totally unfair and so cruel, we know that, in a really horrendous situation, how lucky we were even to get to meet him. I see so many stories of T18 babies born sleeping and we had 2 perfect whole days of loving him, feeding him, changing his nappies and just being a mummy and daddy.

We decided to raise money for SOFT UK to help bring awareness of Trisomy 18 and asked our friends and family to donate via Facebook so that they can continue to help and support families like ours. Without SOFT UK we would have had a very different experience and just knowing that everyone on those calls 100% understands everything you are thinking and feeling is priceless. They were supportive, not only through the pregnancy, but they sent me emails of condolence after Freddie passed away and have always offered support. I know they also offer support to siblings, grandparents and many more groups as it's not just the parents who suffer the loss. They can be on hand as much or as little as you need them to be.

We know Freddie is up there playing on the rainbows  and he will always be the brightest star  in the night sky and he will forever be in our broken hearts. Not a day goes by we don’t think about him and we miss him so much and will love him forever!

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