George’s Story, by his mum, Charlie
When I was pregnant with George, we were told we had a 1 in 10 chance of him having Down Syndrome. We went for an NIPT blood test, after this, which came back as 1 in 100,000. So then we thought nothing more of it. At a growth scan, it was noticed that he had small femurs, which can be an indicator of Down Syndrome, but as I’d had the NIPT, it was of no concern.
At 31 weeks, after a growth scan showed lack of growth and poor blood flow, I was admitted into hospital and given steroid injections. I was told he would be here within the next week! On the 14th April, after CTG monitoring showed a lack of variation in his heart, I was told theatre was being prepped and it was now safer for him to be on the outside. We went down to theatre and met the Neonatal Consultant, who explained that if he required assistance with breathing, we may not see him. At 5:23pm George entered the world screaming! The relief of hearing that cry is something I’ll never forget. We spent a few minutes with him and then he went off to NICU. At midnight I was allowed down to meet him properly for a bit and then had to wait till the next morning to return. When we went down we were told he had markers consistent with Down Syndrome. Our world felt like it fell apart! How could the NIPT be wrong?
We waited 24hrs for the confirmation and were sat down to have it confirmed. We were told how we’d become George’s advocates, how Elliott would love him the same no matter what and how this was just a part of George. The following 24 hours were hard. Having a baby in NICU, whilst being on a different ward full of women and their babies, was tough. I hadn’t had a chance to bond with George and I felt such a disconnect from him. The midwives were great and put me in a side room and allowed Billy to stay past his allotted hours.
We sat upstairs Googling and researching everything there was to know. This was where I found NDSSG, and that changed our outlook so much. To know we weren’t alone, that there were so many people, locally, in the same situation as us took a weight off. The more we researched and spent time with George, the more we realised it really wasn’t a big deal. The next day I pushed to be discharged, so I could live on the Neonatal Unit, and there we spent 4 weeks.
George never required any breathing assistance. He just needed to feed and to grow! Our biggest worry was the affect it would have on our eldest, Elliott. All I could think about was would he be neglected, as George would require a higher level of care? Would he grow up to resent us or George?
George has only been in our lives for nearly 6 months but he is most definitely Elliott’s favourite person in the household. He is obsessed with ‘baby George’ – as everyone now calls him – and will proudly show him off to anyone we speak to. Whenever he cries, Elliott is straight on the case to shout at him, “It’s ok baby George! Don’t cry!” and pat his belly.
Their bond is so strong and it’s amazing to see them grow together. Nursery have told us a few times how Elliott will get upset because he wants ‘his baby George’ and how all he talks about is baby George. I wish we knew then what we know now as we needn’t have worried.