"My little love, keep showing me how wrong i was"
Being a mum is something I’ve always wanted in life. To have a house full of the
laughter and smiles that only children can bring.
My journey to motherhood has not been as straight forward as I initially imagined it
would be. I feel like we’re led to believe that the journey is easy.
I first got pregnant at the start of 2020. Me and Ollie (my fiancé) were really excited
and told our families at just 6 weeks because we naively thought things would be fine.
At my 12 week scan we were told there were abnormalities and an amniocentesis
confirmed that little Leo had Edwards Syndrome. Leo was born on 25th June 2020
after I went through a termination for medical reasons. Giving birth to him and
having to say goodbye is something that will stay with me forever.
Three months after we said goodbye to Leo, I suffered a miscarriage and three months after this again I became pregnant with Ellis.
Ellis’ pregnancy seemed to be going well and both NHS scans showed that he was
growing and nothing seemed out of the ordinary. I was so adamant to have the
‘normal’ exciting pregnancy that everyone else had so I booked us in for a 4D scan at 27 weeks.
Seeing his face in 4D on the scan screen was amazing and I finally let myself relax
and believe that all was going to be fine. Afterwards, when we were waiting in the
room for them to load the pictures up for us to pick our favourite, we were called into
a side room and told they thought he had ‘double bubble’, which meant that his stomach had no exit.
Various further scans confirmed that his stomach was in fact blocked and he would
need to have surgery after birth. As 1 in 3 babies that have this blockage also have
Down Syndrome, we went on to have further testing which actually came back as low risk.
I was induced at 37 weeks so that Ellis could have his operation and he was taken
straight away without any of my planned skin to skin or delayed cord clamping
because he was struggling to breathe. I was then wheeled up to meet him a few
hours later and the consultant confirmed he had seen soft markers for Down Syndrome.
Ellis had his surgery at just 2 days old and was resuscitated after ‘turning blue’ (what we were told by the surgeon’s). The day after this they confirmed his down
Syndrome diagnosis. It felt like my whole vision of what I imagined a pregnancy to be like had changed. Nothing seemed simple and there always seemed to be something that would come and shock us.
I was so torn. I had just been told my baby almost died in surgery but found it hard
to process this before we were given his diagnosis. It was all a massive shock and of course I was still recovering from my c-section myself so I was both mentally and
physically tired.
My journey to be Ellis’ mum has not been easy and each day is still currently filled
with its own struggles as we as a family learn together what having Down Syndrome means for him and his future but I wouldn’t have life any other way.
I absolutely love being Ellis’ mum as I get to wake up every day to his smile, hugs
and kisses and it really does feel like I’m living in a dream having a baby earth side.
If I could go back in time and speak to myself once we were given his diagnosis I
would say:-
- It’s so important to understand that whilst you have nothing but unconditional
love for your baby, things are different to how you imagined them to be and so
you are allowed to feel sadness. The two can live side by side.
- There are a lot of appointments at first and the information you are given can
be overwhelming but the appointments do start to drop off so hang on in there
- Although people will tell you things about your baby i.e. ‘because he has
Down Syndrome he will do this…’ etc, he is YOUR baby and you know him better than anyone else
- Talk through things with your partner. It can be hard as there is still a one
parent rule for a lot of appointments but it is important that you both go
through this journey together as much as possible.
Ellis is so determined and cheeky and loves smiling at people. He also extremely
calm and loves to take everything in. I’m so lucky that I get to live life with him by my side.
Every day Ellis makes me proud. From that baby who was resuscitated and made
us worry about the effect this would have on his brain, to my little boy hitting his
targets, sitting and trying to crawl around the room. His determination just proves to
me that I was wrong to assume that he would be unable to hit any milestones at all because of his disability.
