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My blood tests from the 12 week scans and tests were the first thing to highlight that something might be ‘wrong' in the pregnancy. I had low Papp A and high HCG. And with those words, little did we know we were entering a whole new world, a foreign land. What this translated to was a 1:24 chance (the word typically used is risk) of our baby having Down Syndrome. It hit hard. It’s something that you don’t think will happen to you. From this point, you’re suddenly thrown into making decisions about ‘what to do next'. We declined the option for a CVS or amniocentesis as it wasn’t the right option for us. However, we felt we needed a more to work with than a 1:24 chance so we opted to pay for an NIPT (a screening test) involving more scans and blood tests at 14 weeks. The results came back about a week later giving us a 91% chance of DS.
It’d be a lie if I didn’t say we weren’t devastated and at a loss to know what to do. We weren’t a family that was prepared for this and we were, well....scared. We were told the medical facts and options, given a leaflet and sent on our way. We weren’t asked if we wanted a termination nor coerced into having an Amnio. As time ticked by a decision didn’t seem to be getting any easier. How do you make this decision? I read. A lot. And it was helpful. It began to open up the idea that DS wasn’t this horrid, scary thing that I knew it to be. My views were outdated and I learned a lot. I realised that all the things I feared for my baby with DS were the same things I worried about for my eldest, typical child.
We were looked after during the pregnancy, having extra scans and checks, meeting with a consultant or 2 to answer questions. Beau's birth was quick and ‘normal'. A couple of hours after he was born he had a quick visit to the Paediatrician to check his oxygen levels but was back in my arms within half an hour. He took to breastfeeding like a dream, and better than his brother. He had some bloods taken (to confirm his karyotype & formally diagnose T21) and was checked by the Dr. We were sent home the next day with no more or less support or information than any other typical birth. It felt like we should have had something but we managed. The DS community, particularly via Facebook, has been a mine of information and support. That I certainly couldn't do without. Beau was quiet and sleepy for the first 3 months of his life. Health wise he has a few things going on but thankfully nothing that’s insurmountable. He gets to see a few different professionals and I’ve learned that you need to tussle, hassle and politely push to get the things you need. Sometimes it’s a battle. But I’d do it every minute of every day for this sunshine of mine.
He is a delight, a wonder, determined, funny, loving, content, happy, wilful, chatty, engaging little boy. He's loud and quiet, he lets you know when he’s getting bugged or when he wants something. He loves playing with his big brother, showing us how he can stand up, having cuddles, laughing. He enjoys going to baby sensory and sign language class. Mostly he loves being with his family. His smile and laugh fill your heart with joy and lights up the room. I see a lot of my eldest son in him too, looks and personality wise. He's everything you would want in a son, just with that little bit extra. All the more to love.
