Written by Matilda’s mum Linzi
I’ve never thought about having a child with a disability, but that became my reality when in March 2019, we got a confirmed pre-natal diagnosis of Down’s syndrome when I was around 17 weeks pregnant. Before this, I’d never given the possibility that I would carry a child with an extra chromosome. I had two older children, 13 and 12 with no health issues – I was young (29) fit and healthy, so it came as a massive shock. Obviously after a lot of research, I came to realise that Down’s syndrome happens by chance. It has nothing to do with how fit or healthy a person is, and that we happened to be that 1/2000 ‘chance’.
Matilda was a dream pregnancy, despite some complications that showed on scans. We knew she had an extra chromosome, and we knew she would be born with clubbed feet. What we weren’t prepared for was at just under 36 weeks of pregnancy, in July 2019, Matilda showed signs of slow growth. It was decided then that she was better out than in. After being induced and trying for a natural birth, Matilda decided that she wanted to keep us on our toes – she flipped herself breach whilst I was dilated at around 4cms, so it was decided that an emergency C-section was our best and safest option for her. Whilst this was my biggest nightmare, it was nothing compared to finding out at eight days old that Matilda had a serious heart defect that required emergency surgery.
My tiny baby, only 4lb 3 at the time, had to be rushed to Our Lady’s Children’s Hospital in Dublin, where it was decided surgery was urgent in order to repair her coarctation of the aorta. So at 13 days old, we kissed our little girl goodbye, praying for a miracle. The operation was a success, thanks to the very experienced surgeons and doctors that work there, and Matilda recovered well in ICU before being transferred back up to The Royal Children’s Hospital in Belfast.
Despite surgery being a success, we were dealt another blow – that Matilda had suspected Necrotising Enterocolitis (NEC) that required two further weeks of her being kept on antibiotics and fluids.
It was very hard for me to see her go through all of this, I just wanted to hold her, feed her, help her, but I couldn’t.
Despite all this, at six weeks old, Matilda was discharged home, after we had been trained up to feed her via NG tube. I had always hoped that I would breastfeed Matilda and so I had been expressing milk for the past six weeks in the hope that one day she would be strong enough to latch. Thankfully despite being told that with all Matilda had gone through, plus having low muscle tone and still being so small that she might not ever get the hang of breastfeeding due to the suck /swallow/breathe coordination, at eight weeks old she surprised us all when she had her very first breastfeed. It was an amazing moment and one I’ll never forget. Matilda was proving us wrong with her strength and determination.
Fast forward to Jan 2021 – we have the healthiest happiest most beautiful little girl, whose character delights us every single day. Matilda loves swimming and is a keen water babies member. She loves giving kisses and waving hello to everyone she meets.
We don’t put pressure on her reaching milestones – she does them in her own time at her own pace, and we are there to support her every step of the way.
We have told our story in numerous magazines and newspapers, in the hope that it will reach someone who needs support and bring more understanding to a condition that is still so misunderstood.
Matilda has caught the eye of many boutiques – having been asked to model their clothing brand and featuring on some popular brands online. Inclusion and representation in the Down’s syndrome community is our goal, and we are thankful for the opportunities given to us already.
Despite everything that’s been thrown at her, she has shown us her strength and in that our Instagram blog was created @mighty.matilda to document her journey and show people the reality of Down’s syndrome – that it is not the end of the world, but in fact the start of an exciting new one.