Submitted by Liberty.
Apart from constant anxiety, Ellis’ pregnancy was pretty straight forward at the start with the 12 week and 20 week scans showing nothing out of the ordinary. At 27 weeks we had a private 4d scan which showed that he had double bubble. This meant that his stomach had a blockage and would need to be operated on at birth.
As 1 in 3 babies who have double bubble also have Down Syndrome, we paid for the non-invasive testing (NIPT) to try and prepare ourselves. The results came back showing Ellis was low risk for having Down Syndrome and even though I was worried about the operation he was going to need, I started to look forward to meeting him.
I was induced at 37 weeks and Ellis was born by emergency C-section. As soon as we went to see him in NICU after he had been stabilised, the Consultant told us they had seen soft markers for Down Syndrome.
At the time I was obviously in shock after our NIPT results had shown him to be low risk but I think I was just so relieved that Ellis was here and alive that I didn’t really have time to process it.
Ellis went on to have his surgery at just 2 days old and whilst his surgery went well, he had to be resuscitated afterwards. I remember the surgeons coming round to speak to us and they seemed so shaken up by it all that it made me realise just how lucky we were that he was OK. It was the day after all of this drama that the blood tests confirmed that he did in fact have Down Syndrome.
I felt almost like I couldn’t enjoy those first few months because I was mourning the baby I thought I was going to have and worrying about what life would be.
My Nan said to me, “He is still a baby and just needs you to love him and feed him as you would with any baby”. It was the most simple thing for her to say but at the same time, so important to remember.
If I were to speak to a new mum with a diagnosis I’d say:
- Initially just focus on the fact that this is your baby and all they need is your love;
- Once you’re ready, join a local down syndrome group. We go to one near us and there is always someone for me to talk to if I’m in need. They also offer early intervention groups which are so helpful for our babies development;
- Go to baby groups. I was scared we wouldn’t fit in! Getting yourself out will help you realise that people aren’t as judgemental as you think. Ellis loves baby sensory and swimming just like any other baby would;
- Talk through things with your partner. This advice works with any new parent but having a diagnosis can be a bit daunting and hard on a relationship;
- Once they start to get their personality it will get so much easier and you won’t see them as their diagnosis. In the weirdest way ,I can no longer see that Ellis has Down Syndrome as to me, he is just the Ellis that we have grown to love.
Yes things are slightly different at the start as you will initially have a lot of appointments and information thrown at you about how to help your baby develop, but it does get better. I can honestly say that Ells has been worth every moment.
What I would wish for Ellis’ future is that all parents teach their children to be inclusive and kind to others that are a little bit different. One of the hardest things is worrying how people will treat Ellis. I am determined to ensure Ellis grows up knowing he has a right to be in society just as much as anyone else.
When you look at it simply, when you are pregnant all that you wish for is a happy baby to love and watch grow up and with a baby with Down syndrome, you have just that.
