This couple shares how their Down syndrome child changed their life

Posted on Mar 17th, 2017

When Jessica and Jonathan Roberts’ unborn child was diagnosed with Down syndrome, they thought their world had come to an end. Little did they know how much joy was in store for them. As told to Lynne Gidish

Couple shares how Down Syndrome child changed their life

Like every mother, I had dreams and aspirations for my unborn child. There was so much excitement about my first pregnancy. As I was young, fit and healthy.  The idea of there being any problems with the pregnancy never crossed my mind.

At the 20-week scan, my gynae picked up an effusion on the baby’s heart (fluid around the heart), but we weren’t really worried – especially when he mentioned that it usually self-repairs during pregnancy. We were referred to a specialist as a precaution.

ALSO SEE: Prenatal screening tests for Down syndrome

When the doctor informed us that he wasn’t concerned about the heart, but that the big issue was the underdeveloped nasal bone, which is a soft marker for Down syndrome, our world instantly crumbled. Before I had the amniocentesis I knew deep down that the child I was carrying was different. Both my husband, Jonathan, and I were devastated. Although neither of us had been exposed to a Down syndrome child and knew nothing about the congenital disorder, when given the choice to terminate the pregnancy, we both immediately said we were going ahead with it without even looking at each another.

Down syndrome

Photo credit: Kate Martens Photography

The second half of my pregnancy was a roller-coaster ride of emotions. Overnight, all the euphoria, excitement and wonder of having a first child was replaced by a whole range of conflicting feelings. It was extremely difficult to come to terms with, given the fact that my first blood tests had revealed a one in 3 500 chance of occurrence.

There was an overwhelming sense of loss, as I had to let go of all the expectations for my “perfect” child in a “perfect” world. By that stage, he was Luke and it wasn’t easy to accept that all those hopes and dreams I had for his future were no longer possible.

That’s when the grieving process kicked in – I had to let go of all my expectations, which went hand in hand with immense guilt. While I was grieving the loss of a normal, healthy child as well as all my unfulfilled dreams, I realised that this little thing inside of me had no say in his genetic make-up or how he is going to slot into the world one day. Jonathan and I cried as we tried to adjust to our new reality and discovered just how strong we are as a couple.

ALSO SEE: Your guide to genetic disorders

Research into Down syndrome proved invaluable, but also brought on the fear factor. There was little good news out there, and our doctors made us aware of all the scary and negative implications of the disorder, such as heart conditions, hearing loss and delayed milestones.

But like our family and friends, who were 100% behind us right from the start and offered us great support, they never pressurised us to terminate the pregnancy. Still, I was scared. There was the constant fear of the unknown and how we were going to cope. I was worried about what lay in store for Luke from a protective perspective. How would other people react to him? How would we, as parents, be able to shelter him from the cruel world we live in? How would we equip him to survive out there? And, most importantly, were we up to the challenge?

By the time Luke arrived, I’d been in touch with other moms of children born with Down syndrome, who were fantastic. They didn’t sugar-coat anything, but for the first time they made us aware of the positive experiences that lay in store for us.

Luke was born on 5 May 2016 and came out navy blue after a prolonged labour followed by a C-section. It was love at first sight, an instant all-consuming love that moms can identify with. The fact that he was healthy was an incredible bonus. Our biggest anxiety was his heart, but once that was given the thumbs up our fears completely disappeared.

We’ve been blessed with a perfectly healthy and happy little boy who just happens to have one extra chromosome in his genetic make-up. At this stage, he has hit every milestone and, while we’re under no illusions that this may slow down as he develops, we are quietly determined and gently encouraging him.

We started baby massage at two months and occupational therapy at six months, both of which have had a great impact on strengthening his low muscle tone, which is part of the disorder, and we do exercises with him every day. Persistence, perseverance and patience have proven to be invaluable in arming our son with every tool he needs in order to develop to his best potential.

ALSO SEE: Benefits of baby massage

The meaning of the name Luke is “bringer of light”, and he’s brought more light than we could ever have imagined. Every morning, he wakes up with a big, gummy smile, always so happy to be here. Wherever he goes, he brings light and joy to the lives of others – to us, his grandparents, the whole family, and even strangers.

Luke has taught me so many lessons, and, as I’ve written in my blog Learning from Luke, I’ve discovered that it isn’t about how people react to him, but rather how he reacts to people. One smile, one intense stare and one tight finger grab at a time Luke is changing lives.

Down syndrome

Photo credit: Kate Martens Photography

I’ve finally realised that “normal” is your own perception, and that what Jonathan and I are experiencing as parents is exactly the same as every other parent’s journey. We may be delayed with certain things on the road, but the path is the same and we remain positive about what lies ahead – forever grateful that Luke chose us to be his parents.

Dealing with a Down syndrome diagnosis

Jessica and Jonathan offer the following advice to parents who are expecting a Down’s syndrome baby:

  • Don’t feel pressurised into making decisions – this is your child, your life and your choice.
  • Grieve – cry, shout and scream if you have to. Get rid of all that negativity so that room can be made for the most incredible joy that is going to invade your heart.
  • Educate yourself – and not just about the scary stuff. There are many inspirational Instagram, Facebook and blog accounts out there. Reach out, hear and feel the positivity.
  • Get support – now is the time to lean on family, friends and other parents in the same situation and to garner strength from them.
  • Be excited – you are in for the most rewarding, happy, exhilarating and challenging ride.

About Lynne Gidish

A freelance journalist and content writer with a passion for people and health. She has worked in the magazine industry for many years and is a  regular contributor to Living and Loving.