Kelowna resident Janelle Baldwin shares her story about how her family changed and flourished with the birth of a unique little girl named Kayla.
“The cord snapped…” the paramedic called over his shoulder as he walked toward the ambulance with our newborn daughter. Born on the side of the road on a crisp, cloudy August morning—an unusual beginning for a unique little girl.
And so began our journey with a child born with Down syndrome.
We didn’t know prior to Kayla’s birth that she had Down syndrome. Three ultrasounds failed to detect anything unusual and we chose not have an amniocentesis. Even if we had, we wouldn’t have chosen differently.
Unfortunately, it’s rare to find a health care professional who frames Down syndrome (DS) in a positive light and so much unnecessary fear is being propagated. After Kayla was born, one nurse shared a story about a couple who’d had fraternal twins at the hospital. One was born with DS and one was not. The couple chose to leave the child with Down syndrome at the hospital. They took the ‘normal’ baby home.
The DS team at the Alberta Children’s Hospital told us about 90 per cent of expectant parents who find out during pregnancy that their child will be born with Down syndrome choose to terminate. That was 10 years ago. Today, amniocentesis isn’t required for a diagnosis. A simple blood test will confirm it. With less risk involved, more pregnancies are being tested, resulting in more terminations. Since the blood test became available, no children with Down syndrome have been born in Iceland.
In Denmark, they anticipate Down syndrome will be a thing of the past by 2030. Perhaps one day no children with DS will be born anywhere. And that breaks my heart.
So, what is Down syndrome? Down syndrome—also called Trisomy 21—is a genetic condition where a child receives an extra chromosome on the twenty-first pair: 3 on 21. We like to say Kayla has designer genes.
There are classic features associated with Down syndrome, including almond shaped eyes, a single crease across the palm, a wider gap between the first and second toe and low muscle tone. Cognitive and physical delays are present in every DS child but they range from mild to severe.
When Kayla was born, we didn’t know anyone with Down syndrome. We were frightened by the barrage of ‘facts’ and the list of things our child probably couldn’t do. At the time, we didn’t know that an increasing number of kids with Down syndrome go to college, get married and lead productive lives. We didn’t know if she’d be able to read, write, or speak. We had no idea what to expect.
Just as every typical child is different, so is every child with Down syndrome. There is no way to predict how any child will turn out. For us, Kayla, now 10-years-old, has been a joy. She likes to sing and dance and her laugh is infectious. She’s learning to read and write and she attends a regular elementary school. Her classmates love having her there. We’ve probably learned more from her than she has from us. She’s taught us to slow down and experience life instead of rushing through it. She’s taught us about kindness, acceptance, patience, grace and unconditional love. She’s been a positive influence in our lives and all those she comes into contact with.
When Kayla was a baby, her dad and I created a booklet called Celebrating Kayla to help combat the negative information typically given to parents-to-be about Down syndrome. It was handed out by obstetricians and the Down syndrome team in Calgary, where Kayla was born. The opening paragraph of this article is an excerpt from that booklet and you can read it below.
March 21st is World Down Syndrome day: 3/21. Celebrate with us. Different is good.