• Nakita

Nothing Down About Willow: The Truth About Down's Syndrome

Everyone has a story to tell. Stour Valley Creative provides the portraits and the platform. The following article was written by Nakita Duffy. Portraits were taken by Meg Cousins of Stour Valley Creative.

I am many things, made possible by many people. I’m a daughter, sister, auntie, wife, I’m a breastfeeding support worker, but most importantly I’m a mother. Not just any mother I’m a special needs mother.

My youngest daughter has Down Syndrome.

Sounds terrifying, right? I was terrified.

I was completely and utterly terrified right up until I held my 7lb 3oz perfect-in-every-way daughter in my arms. Once I looked at her I knew everything was going to be fine, because I loved her more than anything in the whole world (extra chromosome included).

I realised as I sat in the birth pool, that she was not a scary diagnosis, she was just a tiny baby, MY tiny baby. Despite every negative thing the doctors, consultants and midwives had said to me, she was perfect in our eyes.

We declined the prenatal testing with our second and third pregnancy, because the risk came back so low with our first daughter, and it didn’t bother us regardless. After the 12 week scan revealed a worryingly high amount of fluid on Willows nuchal fold we were catapulted into the most emotionally exhausting 7 months of our lives! We were shuttling to and from a new hospital appointment every week, checking her heart, checking her organs, checking my insulin levels and her growth. We were told by a consultant we’d never seen before at a 32 week scan that Willow would probably be stillborn because of Down Syndrome. Bear in mind we never actually had it confirmed with the amniocentesis (long needle which takes amniotic fluid to test for Down syndrome) because there is a risk of miscarriage and we loved this baby no matter what!

What that consultant said was untrue and unfair to say to us! We came across this outdated prejudice behaviour many times throughout the pregnancy. During a 37 week scan we were told we “still have options”. Meaning we can choose to abort at ANY TIME. What madness. Considering Down Syndrome wasn’t even confirmed, we were being told they would kill our baby, our 37 week baby.

My husband called the charity ARC after our first scan, who are supposed to give unbiased advice and a listening ear. Instead he was told to consider aborting Willow because of the impact she would have on our two “normal daughters” not very unbiased.

This kind of treatment is one of the reasons I started documenting our days on social media. I took to Instagram to share our story, to reassure those in the same situation as us and help educate those who seek to understand what life with Willow is really all about.

I feel compelled to do this in light of the new NIPT test rolling out across the NHS. It stands for Non Invasive Prenatal Testing. It can take a sample of Mother’s blood and from that sample it can determine with over 99% accuracy whether or not the baby she is carrying has Down Syndrome. While this may seem like a wonderful advancement I must also share that in the UK 90% of positive tests end up in abortion. Up until Christmas 2018 this NIPT was only available privately and cost a small fortune! So there were a number of Down Syndrome babies slipping through undetected. Now I fear that this advancement will cause us to follow in Iceland’s footsteps where there is nearly 100% termination of these truly magical babies.

Willow has brought so much joy to our lives, so much love and an endless supply of laughter. We need to change how Down Syndrome is depicted, it is not something to be feared and screened out but something to be embraced and celebrated.

They are no longer hidden away in institutions and left to go mad, they are included in families, go to mainstream school, embraced by friends, cultivate relationships, lead happy, independent and fulfilling lives full of love and happiness. They contribute to society in a way that is immeasurable by a diagnosis and they are able to do this with our understanding and support.

I’m using my platform to spread awareness, to make this world a better place for Willow, she (and all others with Down Syndrome) didn’t ask to be born, they can’t help having an extra chromosome. It’s our job to make her life as wonderful as it can be, just as we do for our two other daughters!

We cannot imagine our lives without Willow, yes she does things a little slower than average. It may take her longer to learn how to walk, talk, read and write but she will get there EVENTUALLY and that’s what’s important. We are enjoying this scenic route she is taking us on and are trying to show a glimpse of just how beautiful and rewarding this journey truly is. We are proud to be part of The Lucky Few!