World Down Syndrome Day: My Story

This post has been a blank page on my laptop for quite a while now, I have thought about writing this post many times, even what would I write in this post or what wouldn’t I write. Every time I think about sitting down and writing this up I can’t help but come to tears, it’s a very emotional subject for me to talk about. There is so much you don’t know about Down syndrome, heck there is still so much that I myself don’t know. I’m not here to tell you everything you need to know, I’m only 4 months in and I’m just taking it day by day. I have figured that I don’t really know enough to be educating anyone on Down syndrome so I’m just going to document my story and my feelings.

blog titleSo keep reading if you’re at all interested in reading about my story.

I’m going to start way back at the beginning when I was about 6 weeks pregnant. I had my first appointment with the midwife just to take my details before getting an appointment with my midwife. One of the questions I was asked was if I would like the test for Trisomy 13/18/21 which would consist of a measurement of the back of the baby’s neck and a blood test from me. I have always said I wouldn’t want those tests which is exactly what I told the midwife when she asked. She completely ignored me and ticked yes saying that I can change my mind to no, but I can’t change it to yes. I told Rhys this and he said we might as well get them done then, it’s no harm to the baby. So I went along with it, knowing that I didn’t want them I had them anyway.

Her neck measurement was within their normal ratio and we were told that we would be contacted within a week if anything came up, otherwise we’d receive a letter in the post to say they didn’t suspect anything. Two weeks later I received a call in work to say that the chances of our baby having Trisomy 13 (Pateu’s) and Trisomy 18 (Edwards) were 1:10,000 but our risk for Trisomy 21 (Down syndrome) was 1:64. We were asked if we would like a NIPT test which is just a blog test from me where they look at the baby’s DNA within my blood so I agreed. The NIPT test we were told is 99% accurate so expect our baby to have Down syndrome. We were offered an amniocentesis but I refused because we were keeping our baby regardless and I wasn’t willing to put her life at risk for a 100% result a couple of months early.

blog blankI was asked by numerous doctors and consultants why I didn’t want an amniocentesis, to me a simple no answer when I was first asked should have been enough. I was also told by a consultant that I would probably have to have a c-section because by baby wouldn’t be able to handle a vaginal birth. (partially because she was small but thats a story for another day)

I was given some leaflets and some website addresses. That was pretty much it. No one sat me down and talked anything through with me. Because of her potential Down syndrome we had extra scans, they found she had enlarged ventricles in her brain, too much fluid on her left kidney and a 0.3mm hole in her heart… and do you know what they said to me every time ‘its associated with down syndrome’ actually I think you’ll find that babies get all kinds of things regardless of down syndrome or not. Her ventricles reduced, so did the fluid on her kidney and the hole closed – is that associated with down syndrome as well?! 

It was the one phrase that they kept saying to me all the time and it drove me up the wall. My dad just kept saying ‘oh, well hopefully things will be alright and she wont have it’, my boyfriend just said we’ll cross that bridge if we come to it, he didn’t want to even talk about it and my mum said it’ll be alright, it’ll all be fine.

Not one person said to me, ‘you know what, this will be the best thing to happen to you, she will be the most amazing person and will teach you so much about yourself that you never knew, you will be so proud of everything she does and she will love you much more than anyone else ever can. You will accomplish things together that you never thought possible.’ No one ever said anything like this. It was always the negatives that can come along with Down Syndrome and how I’ll cope with things. You shouldn’t have to cope, you should be excited and happy either way.

I still cry now when I think about it. It took me a long time to come to terms with the results. I’m not going to lie, I never wanted a child with down syndrome, it’s not something I would have chosen having been given the choice. I always wanted what you would call a ‘happy, healthy, normal child’ and do you know what I got – a happy (most of the time), healthy normal child who just happens to have a little something extra. I wouldn’t change her for anything, to me she is perfect.

Mila was probably about 8 weeks old when I finally got to grips with the reality. I took it quite badly and I personally think if there had been more positive information out there I wouldn’t have felt so low about things. I haven’t done any more research into anything because I find that we are going at our own pace and no matter how quickly or slowly mile reaches her milestones, she will reach them.

Sorry that was a little bit of a mess wasn’t it. I’m not really very good at explaining all this, I get so emotional thinking about it. I do have to say though I follow a couple of mums over on Instagram and seeing their posts and watching their stories has actually helped me, I know I’m not alone and that there are so many of us with children with down syndrome and we don’t see it as a burden but as a blessing.

Nicola from @baileyandthebabies has put together a video if you want to check it out – here.

Also check out these instagrams, they’re helped me so far and they have such gorgeous little ones.
wcatcharity_officialbaileyandthebabieslife_as_twins_2018ava_adored

So, that was a little bit of a long post, but the more awareness we can get out there the better. I hope you’re all rocking your odd socks today in Honor of Down Syndrome.
HAYLEY

6 thoughts on “World Down Syndrome Day: My Story

  1. monicajakubisin says:

    Thank you for sharing your story. Very good writing. We started a blog about our daughter because we also felt there was a lack of good information. Perhaps it will help. We have posts from the time of her birth to the present. (There were no blogs when she was born, but we saved our letters to family and built the blog using them.) She is now 26 and celebrating World Down Syndrome Day going out to lunch with a friend before going to work this afternoon. Living a Joyful Life with Down Syndrome, find it at monicajakubisin.wordpress.com

    Like

    • wldxhrt says:

      thank you for your comment, I’ll be sure to check out your blog. We need more information out there, more positive information and not just all the negatives.

      Like

  2. Eefje D. says:

    Thank you for sharing! Mila is a beautiful baby and I’m sure she gets all the love she deserves! You’re an amazing mom and I know you can do this!

    Lots of love.

    Like

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