A blog by Laura Lagan, Finance Business Partner, Finance Directorate, Queen's University Belfast.

On 18 December 2019 my daughter Anna Rose arrived into the world.  Weighing a tiny 5lbs 6ozs, she had been born a few weeks earlier than expected. Having moved to a new house the day before, and with a week before Christmas, it was utter chaos.

Shortly after Anna Rose was born, we had confirmation that she has Trisomy 21 (most known as Down syndrome or T21). She spent her first few days in the neonatal and celebrated her first Christmas in the Ulster Hospital.

Around 50% of babies born with T21 have heart conditions. Early scans and a more detailed echo within the first few weeks confirmed only a small issue that simply requires monitoring every few years, with no expected surgery required.

Despite T21 being the most common naturally occurring chromosomal condition, I went through a range of emotions when I received Anna Rose’s diagnosis: fear, anger and shock as I processed the different path my life would take. A huge wave of fear engulfed me, with my mind racing to the future about all sorts of scenarios.

My husband and I laughed and cried for a period, but we were never sad or devastated. Why would we be?  We had a beautiful perfect, healthy little baby girl who just made our family of 5 complete. The ‘Why me? quickly changed to ‘Why not me?’. I also have a 4-year-old daughter and 18-year-old son who have so much love for Anna Rose so, really, who better than our family?

However, as the weeks passed, and I adjusted to life with a new baby girl, I had a few encounters that brought home to me the reality that negative and outdated perceptions of having a baby with T21 are not a thing of the past.

When Anna Rose was two weeks old, I was told by a newly qualified teacher, “Sure they can now get jobs nowadays” and a list of minimum wage jobs was provided. When announcing the arrival of Anna Rose, I received one ‘I’m sorry’ message back, instead of the congratulations I was expecting and had received from everyone else.

For my family and friends, we simply saw Anna Rose; we couldn’t see a diagnosis of T21. So, for me, that made these attitudes all the more hurtful. It was difficult to match the negativity with someone so perfect and beautiful.

I believe the media, textbook language, an ableist society, together with misunderstanding and outdated perceptions, have shaped the way we think about the realities of life with T21. We live in a country where disability-related legislation exists, but this legislation is at risk of being hindered by public assumptions and stereotypes. I cannot recall ever seeing an awareness campaign on life with having T21, nor can I recall being taught much in school about the condition. I don’t even think I ever gave it much thought.

Each person with Down syndrome is an individual with strengths, talents and abilities and yet there is a misconception that there are varying degrees or levels of Down syndrome.

You either have Down syndrome or you don’t. 

Many people with Down syndrome are leading independent, successful lives. So many are breaking barriers and shattering stereotypes, becoming actors, models, businesspeople, athletes and working in Government. Locally, you will see Katie Grant , an inspiring young woman who has battled prejudice to lead a successful modelling career; Ellie Goldstein’s image for Gucci became the brands most liked post in 2020; while Chris Nikic, a 21-year-old triathlete from Florida, became the first person with Down syndrome to finish an ironman event. Just a handful of so many individuals who are forging ahead and paving a path for a more inclusive world for my daughter. 

Anna Rose herself is breaking down barriers and misconceptions about Down syndrome.

Life with Anna Rose is amazing; she amazes me every day with her tenacity and her determination to learn. She has hypotonia (low muscle tone) which means it will simply take her longer to crawl, walk, climb, run, ride a bike. She works extra hard to build up her muscles and she will get there. We celebrate that little bit more as we know how hard she works.

While T21 impacts on Anna Roses’ ability to learn, it doesn’t STOP her from learning.  From birth we have been focused on early intervention, incorporating therapies into everyday play so they are fun. We use Makaton and Jolly Phonics for communication with sensory play and physiotherapy sessions for her mobility. Anna Rose has already used Makaton to sign for ‘milk’ and copies sounds with so much fun and animation.  She is an amazing visual learner and will thrive with an adapted style of learning.

Down syndrome is only a part of who Anna Rose is. Anna Rose is not a Down syndrome baby, nor is she ‘Downs’. Person-first language is so important. She is, first and foremost, Anna Rose and she just happens to have Down syndrome. 

Down syndrome can be abbreviated to DS and some use the word Trisomy 21 or T21. It is no longer appropriate to abbreviate Down syndrome to ‘Downs’.

I don’t want people to be awkward around me for fear of saying the wrong thing. I have no expectation that everyone will know exactly what to say. Language and change must evolve.

My big wish for Anna Rose is she will live in a world where negative and outdated perceptions of Down syndrome are a thing of the past. I hope she won’t face any prejudice or exclusion and will have the same opportunities as any child.

I will be behind my daughter every step of the way in life, placing no limitations as to what she can achieve when she goes for it. I will focus on what she can do and ensure that she takes each opportunity to lead a rich, happy, fulfilling life. 

She has a smile that lights up the room, the most beautiful, engaging blue eyes that shine like diamonds (Anna Rose has Brushfield spots on her eyes that make her eyes glisten), the cutest little fingers, gives the squishiest hugs and will shout so loud if she doesn’t get her dinner on time (the Jolly Phonics has worked!). She is so worthy of everything life can give her back in return. She is who she is because of that extra chromosome. If she didn’t have T21 she wouldn’t be Anna Rose, it is a part of her.

In only one year, Anna Rose has brought so much joy into our house, enriching our lives far greater than we could ever have imagined in so many ways. For us it is only getting better and we are excited about the future of our family.

I hope that in writing this I may have challenged or changed even one person’s understanding of Down syndrome.

Having a baby with T21 wasn’t what I expected, nor was it a community I ever thought I would be part of, but Anna Rose is everything I wanted and more than I thought I would get. 

 

Follow Laura on Instagram: @the_houtmans

Laura Lagan

Finance Business Partner, Finance Directorate