In light of #WorldDownSyndromeDay I wanted to dedicate a post to what Down Syndrome means to me and hopefully help raise awareness in the process.
When I was 2 years old my mum had a baby, a tiny 3lbs 14oz baby who was very poorly. When my brother was born my parents were told he had DS. 25 years ago there wasn’t as much awareness of DS as there is today so you can imagine my parents weren’t prepared for baby with a disability. The healthcare professional asked if they wanted to keep their baby, and if not someone would love it. What a harsh thing to say to new parents when they are getting their own heads around this news. Obviously my parents didn’t want to discard my brother, they spent 9 months waiting for his arrival and a sudden disability needed time to figure out. Unfortunately this was and still is the common conception of DS, a disability, a problem. Which definitely isn’t the case at all.
Perhaps I am biased as all my life I have loved someone with DS, my brother is the kindest, most amazing person and if it wasn’t for him I don’t think I would be the person I am today. He showed me a world full of innocence and wonder and I will always be grateful for that. I would love to be in his world if just for a day, in his world everything is or it isn’t. There is no war or hurting, and if he does hurt he moves on very quickly. I remember watching him and mothering him as I grew up and my whole life has been to look after him and protect him and I failed.
In the UK roughly 1000 babies are born with DS.
Those who have followed me, my blog and Jason’s story will know how my first child came in to this world very suddenly. We didn’t know Jason had DS until the post mortem results, maybe I didn’t want to see any “imperfections” when holding my dead baby or maybe he really just didn’t have the characteristics we would expect. Whatever the reason I didn’t see it in him, yet looking at the very few photos I have of him I can see it. Yet these are not imperfections but part of my son that made him unique.
Translocation Down Syndrome
Translocation DS is a rare form where there are three 21 chromosomes like in trisomy 21 however one of the chromosomes is attached to another chromosome instead of being separate. This is the form of DS that Jason was born with, very rare and usually inherited from a parent. Three to four % of babies born with DS have translocation DS. Due to this type of DS both me and hubby needed to be tested to see whether either of us had a translocation in chromosomes which caused so much pressure on myself especially as because I knew my brother has DS I assumed I carried the gene and I was the reason Jason was so poorly. As it happened neither of us carried that gene and Jason having DS was a “fluke”.
After the prenatal diagnosis of Down Syndrome 91% of pregnancies are aborted.
This saddens me because I believe if parents were given helpful information they could make better decisions. If they were encouraged to talk to other families they could make a more informed decision about whether that decision is right for them. Again I am biased as I have watched my brother lead a very average (I hate the word normal!) life and I know had Jason lived past 37 minutes he would have been very poorly and not as able as my brother yet even knowing his diagnosis I would have kept him. I would give anything to have seen his eyes or heard him cry. But that was stolen from us and I feel bitter that other families aren’t offered the chance to see how wonderful people with down syndrome can be because health ” professionals” aren’t as informed as they should be.
As today is WDSD 2018 I asked my followers and friends to share their odd socks photos and help raise awareness too. I am overwhelmed with how many people have joined in and have spoken about DS and Jason today. I also wanted to share the love and mention Aneurin who like Jason was born was DS and sadly didn’t get to come home with his mummy and daddy either. His mama has been a huge support to me and is part of the amazing Instagram baby loss community that I know and love and she has helped raise awareness and share Aneurin with the world too. I know him and Jason will be celebrating in their odd socks too ❤ THANK YOU to everyone who has sent their socks.