I just came across my Facebook post from 6 August 2020 in which I shared with our wider social media world the fact that Frida had Down Syndrome. I know so many people do, but I am so glad we didn't ever feel sadness about her diagnosis as it has meant that we have been able to enjoy every bit of time with her without worry or concern. Frida is nearly 5 months now and smiling huge smiles, especially when she manages to pull herself up into sitting position (which she does a lot now), trying to roll over, very close to laughing out loud (channeling Auntie Vinnie with a solid silent laugh at present), chatting away, being subjected to very strong cuddles from her big sister and remains an utter joy to be around.
Frida Luna Rose is, so far, at the great age of 2 weeks, gentle and calm but downright grumpy and feisty when she really wants something. She is settling in well to the rhythm of family life, feeds well and sleeps well. She wees all over her new nappy as soon as it is put on (generally when her dad does the changes!) She is manhandled by her big sister and the dog just wants to be close to her all the time. She also happens to have Down Syndrome.
We discovered that she had a high chance of having DS when I was 14 weeks pregnant and consequently we were looked after closely by the Fetal Medicine Unit at St Mike’s in Bristol and by my amazing Community Midwife, who ended up being with us when Frida was born.
We didn’t have a pre natal diagnostic test as we didn’t want to take the very small risk of losing her, but as we moved through the pregnancy (in full lockdown!) we had regular scans and, coupled with a high chance result following a Non Invasive Pre Natal screening Test (NIPT), were very aware that she did have DS.
Other than working through tests for potential health issues, of which she wonderfully has none, at no point did we worry or feel any distress around her likely diagnosis. Our family and friends were supportive and we were very open about it. We had such positive support from everyone we spoke to, but I do think there was an element of our positivity leading the discussion, enabling others to realise that there was nothing to worry about. Nothing to be scared about. Everything to be excited about.
Frida is Frida - and she will be who she wants to be. As you will see below, she has had a good start and I am confident that with the support of us, her wonderful (intelligent and sassy) big sister and our wider family and friends, and the guidance of the incredible people I know we will meet along the way, she will achieve great things.
In writing this, I want people to understand that a diagnosis of DS is not something to fear - and certainly not something to be sorry about. It is simply an extra chromosome and a whole lot of love. Yes, there may be health challenges to work through - but this could be the same for any child, we just get a heads up as to what these might be and the support of professionals to resolve anything quickly. Yes, there will be additional learning challenges - but learning is hard for most children and requires determination on behalf of the parent and child in any situation. And we are prepared. We know where our resources are, we know what early work to do (we did much the same with Ada) and we have found brilliant support of other parents from Positive About Down Syndrome (PADS).
For more information, or to understand better how those who have DS, or who have kids with DS love their lives, give the PADS group a follow. I would also be grateful if you could read this short article around language: person first please - Frida is not a Down Syndrome baby. She is a gorgeous baby who happens to have Down Syndrome. And she is ours. ️
Jess & Glenn xx