‘They told me Archie had Down syndrome. I worried if I would love him’

Archie Stanley was born by emergency Caesarean section on November 15th, 2013. When he was born he didn’t cry, he didn’t make a sound. His mother, Nicola (then 27), remembers hearing the doctor saying “cord around neck three times”.

Archie wasn’t breathing, and the doctors couldn’t get him to breathe for another seven minutes. Before he was rushed to ICU, his dad, Paul, told Nicola that the doctors thought Archie had Down syndrome. For the next five hours, before Nicola met her son, she worried. She worried about her family and how they would cope. She worried if she would love him. Here she talks about the experience and their life since.

Archie’s story

I don’t remember much of how I felt when Paul told me Archie might have Down syndrome, I was just numb. We weren’t expecting our little boy to be so sick when he was born, never mind have Down syndrome. It was a lot to take in. I was wheeled into recovery while Paul went to be with Archie.

When Paul and the doctors arrived back from ICU they told us Archie might not make it through the night. They also confirmed he had Down syndrome. I still hadn’t seen him. In the next five hours before I saw him, I worried about how we were going to cope. I worried about my two daughters, how this would affect their lives. I worried how I would tell my family and friends. My main worry was if I would love him. Eventually the time came for me to meet Archie. I’ve never been so frightened. I didn’t know what to expect.

They wheeled me over to his incubator and I sobbed. He had tubes everywhere. I was so afraid for him and felt so helpless because I couldn’t help him. I reached into his incubator and held his hand. His little hand gripped onto my finger so tight that my worries began to fade and I felt an instant powerful love for him.

As Archie struggled to get better, my worries about him having Down syndrome faded. They never went away, they just weren’t a priority, he was. When Archie was four days old my husband and I were told that he could have brain damage as he wasn’t breathing on his own yet. We were told to prepare for the worst. However, in true Archie fashion he fought and at seven days old he was breathing on his own.

The next day, I got to hold him for the first time. The nurse handed him to me and I just couldn’t believe he was mine. I held him and kissed him as if it was both the first and last time. I wanted him to feel my love and to know I was sorry for ever thinking that I couldn’t love him.

Difficulties

As time went on in hospital, issues arose around feeding and muscle tone (all things that can be a problem for children with Down syndrome). This was a new and strange territory for me and it gave me my first insight to how difficult things might be in the future.

Archie came home when he was three weeks old and his sisters Holly and Daisy (then aged eight and six) got to meet him for the first time. I had tried to explain Down syndrome to them but I think it all went over their heads and, to be honest, he was just a baby to them.

And, as time has gone on, he has become their annoying little brother who knocks on their bedroom door so he can play with them, cries when they leave the room, and who has caused more rows between two sisters over which one he loves the most.

Archie is the most determined, funny and loving person I have ever met. He has opened us up to a world of joy and happiness that we never knew existed. It’s a world where the little things aren’t overlooked, but are celebrated. He has helped us appreciate and enjoy every moment of our lives together as a family. He has taught us to be strong and shown us that sometimes the fear of the unknown is worse than the unknown itself. He has helped me to chill out and worry less and taught me more about myself in his two years with us than I probably would have learned about myself in a lifetime.

People’s perceptions

I hope that when he grows up he can continue to change people’s perceptions of what Down syndrome is, just like he has changed my perceptions, and those of everyone he has met. I hope he continues to be so determined and stubborn.

We love who he is and his Down syndrome is just a small part of him, but it’s also what makes him different. I want him to continue to teach anyone he meets that different can be beautiful.

A safe place for us in challenging times has been the Down Syndrome Centre in Sandyford, Dublin, where I have met other parents who understand exactly how I’m feeling without me having to explain myself.

The centre is Ireland’s first services-led centre for children with Down syndrome. It has become the place where, when we pull up outside, Archie makes the lámh sign for “friends”. Lámh is a sign language communication tool used by children with Down syndrome. For Archie, the centre is where his friends are and where he wanders around like he owns the place. And it’s not surprising because every single person there – other parents and staff – greet my son with love and are genuinely happy to see him.

He took his first steps there. We were in the centre and he suddenly decided to pull himself up on the parallel bars and start walking – his first steps! The walking wasn’t what I remembered most though, funnily enough. What I remember and cherish the most is the joy and happiness that came from the other parents and staff who witnessed this milestone. They all knew and shared the hard work that went into those few steps and so we all celebrated this achievement. As I celebrate all the amazing milestones that their children reach.

Nicola is one of the parents leading the Down Syndrome Centre Little Stars team for the VHI Women's Mini Marathon. If you want to support the centre and join its team, see bit.ly/21kzPmu