‘What I’ve learnt from having a child born with Down Syndrome’

“Luke surprises us every day” Photo: www.cathtatham.com
“Luke surprises us every day” Photo: www.cathtatham.com

Jess Roberts was 23 weeks pregnant when she and her husband, Jon – fearful and uncertain – spent one very long weekend anxiously awaiting test results that would change the course of their lives forever.

They had been at a foetal specialist to check on a cardiac effusion in their unborn child, which can simply be described as a build-up of fluid on the heart.

But the specialist, unconcerned about the effusion at that point, had picked up on something else… Their baby’s nasal bone was underdeveloped, which is one of the primary indicators of Down Syndrome.

“We were completely blindsided,” recalls Jess. Like most pregnant women in South Africa, the mom-to-be had undergone blood tests at the 12-week mark to rule out Down Syndrome.

“From that initial test I was considered very low risk. I had a 1 in 3500 chance of having a child born with Down Syndrome. At 23 weeks it really didn’t cross our minds that it could be our new reality.”

Must read: If there’s one thing you take from today it should be this important message from Dr. Amelia Shepherd

Jess immediately underwent an amniocentesis – a procedure that tests a mother’s amniotic fluid – to confirm the specialist’s suspicions.

But it was a Thursday, so she and Jon would have to wait till the following week to hear the results. “It was the longest weekend of our lives and proved to be quite a test for our relationship.

It was strange though, because a peace eventually came over us. We knew that, whatever the results were, it didn’t really matter. This unborn child was ours and he was ours for a reason.”

With this peace of mind, Jon and Jess were unsurprised the next week when their doctor announced that their baby had tested positive for Down Syndrome.

And while there were many mixed emotions, there was no hesitation from the couple ­– they were keeping their baby, who they would name Luke.

'I had no personal experience with Down Syndrome'

As with any new mom, Google was both Jess’s best friend and her worst enemy.

Not only was she educating herself about motherhood for the first time, she also realised how uneducated she was about Down Syndrome.

“I’ll never forget Googling whether or not one could breastfeed a child born with Down Syndrome – I was that clueless. I had never met someone born with Down Syndrome and, aside from seeing people out and about with similar facial features, I had had no personal experience with it.”

However, through research and connecting with other mothers who were raising children born with Down Syndrome, Jess knew one thing to be true.

Luke was going to be the same as any other newborn, bar an extra chromosome and slightly different facial features.

Once her son was born, Jess realised this to be true. She also learnt that having a child born with Down Syndrome would be the most beautiful blessing that she could ever have dreamed of.

Also read: 'The cashier asked why I'm making a big deal about this' - Mom heads to Equality Court after son in wheelchair denied access to superette

'Luke surprises us every day'

Soon after the initial diagnosis, Jess started jotting down her thoughts and feelings to deal with the myriad of emotions she was experiencing.

This soon developed into a blog about the lessons that she and Jon were learning along the way, hence the title, Learning from Luke.

So what’s the most surprising takeaways from raising a child born with Down Syndrome? According to Jess, it’s that every person born with Down Syndrome is unique.

“People so often paint people with a diagnosis, like those born with Down Syndrome, with the same paintbrush. We tend to forget that they are individuals with unique personalities. Their diagnosis doesn’t define them.”

Jess adds that Luke, now 3.5, has inherited her playful mischievousness on the one hand, while displaying traits of her husband’s calm on the other.

“He looks similar to the both of us but has quirky and unique personality traits that surprise us every day,” she says.

'We knew we wanted another child to complete our family'

Luke was 18 months old when his baby sister, Holly, was born. While the Roberts admit to being put through their paces by having two children so close in age, including one with special needs, the decision to have a second child after Luke was easy.

“We had always discussed having a relatively big family, so when we felt it was time for us to have another child, I reached out to a number of different families who were raising children born with Down Syndrome alongside ‘typical’ siblings.

They were adamant that having another child was the best thing that could have happened to their family,” says Jess.

Also read: Teach your child how to talk about someone with a disability, without being a jerk

She adds that there have been several studies done on siblings of special needs people revealing that typical siblings’ lives are enriched because they have a sibling with special needs.

“The lessons learnt between a typical sibling and a special needs sibling – and the bond that will come out of that relationship – makes it all worth going through. So despite the small age gap between Luke and Holly, we knew we wanted another child to complete our family.”

Moreover, as a result of Luke’s developmental delays, the age gap between him and Holly is even smaller. “It’s like having twins,” says Jess, which she adds is as rewarding as it can be trying at times.

The mom-of-two reveals that, at 19 months, Holly has started developing all the usual gross and fine motor skills of a typical toddler and that Luke has started emulating his sister.

In fact, with Holly’s help and a lot of hard work and therapy, Luke’s vocabulary has blossomed in recent months, to his parents’ pride and delight.

Also read: “A life with Down syndrome can be as full and exciting as any other”

“It’s been an incredibly rewarding and exciting journey to watch them grow up together. It’s a privilege for us to see our children interact and to witness their relationship develop. I have no doubt that Holly will be Luke’s biggest advocate. I know she will look after him with everything inside of her and that having Luke there for Holly is going to be incredible.”

Jess wants other parents to know that there is nothing scary about Down Syndrome, or having a second child in addition to a child with special needs. In fact, she believes having a sibling with special needs can actually be a rewarding and beautiful gift for a typical child.

“Of course, life can be challenging. There are moments that are difficult and there are different stresses that we now have in our family because we have a child born with special needs, but our home is a place of joy and light and that’s a direct result of having Luke in our lives,” concludes Jess.

Chat back:

Are you raising a first-born with special needs? Are you hesitant to have another? Share your thoughts and experiences with the Parent24 team and we could publish your letter. Please let us know if you wish to remain anonymous.

Sign up for Parent24's newsletters.

Read more:

We live in a world where facts and fiction get blurred
In times of uncertainty you need journalism you can trust. For 14 free days, you can have access to a world of in-depth analyses, investigative journalism, top opinions and a range of features. Journalism strengthens democracy. Invest in the future today. Thereafter you will be billed R75 per month. You can cancel anytime and if you cancel within 14 days you won't be billed. 
Subscribe to News24