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21st March 2016

How Down syndrome changed a dad’s life for the better

“Say ‘Congratulations’, not ‘I’m Sorry’. This is the birth of a child, not a funeral. And the birth of a child always calls for congratulations.”

That’s Rick Smith’s advice to friends and family when you tell them your baby has Down syndrome. It’s also how he wishes things had played out with the obstetrician (OB/GYN) when he and his wife Abbie found out that their newborn son, Noah, had the condition.

Since little Noah’s arrival rocked Rick’s world just over five years ago, the dad has been on a mission to change attitudes about Down syndrome, aka Trisomy 21, which is a genetic abnormality that happens when a baby is born with three rather than two copies of the 21st chromosome.

“For some strange reason the OB/GYN wouldn’t look my wife or me in the face. It was a very awkward visit. Then she asked my wife if she’d like some antidepressants. I just couldn’t get over how ‘un-positive’ everyone was. I just kept thinking to myself how strange it was that God just allowed us to have a this beautiful baby boy, yet everyone was acting so sad,” says Rick in a post on his blog, aptly called Noah’sDad.

He’s passionate about sharing, via his blog and one-minute daily videos of Noah, “the story that all children, regardless of a disability, are so worth loving. The story that Down syndrome is OK.”

Rick’s message gels perfectly with that of World Down Syndrome Day, which falls on March 21st every year and aims to raise awareness about what it means to have Down syndrome. Yes, there are potential medical concerns like heart, hearing, speech and vision problems, as well as issues with mental development, but that doesn’t mean a child with Down syndrome cannot live a full and happy life.

The diagnosis is scary, but the outcome doesn’t have to be

Rick and Abbie didn’t get the official diagnosis from their paediatrician until several hours after Noah’s birth. However, Rick found out later that Abbie, being a paediatrician herself, had recognised certain tell-tale physical characteristics associated with Down syndrome. These included Noah’s almond-shaped eyes and a lack of facial definition due to poor muscle tone. He also kept sticking out his tongue, another trait that’s often seen in children with Trisomy 21.

Though Noah’s parents only got the diagnosis after he was born, many people find out while they’re still expecting. This is possible with prenatal ultrasound scans and blood screening ‒ which can flag up a possible high risk of Down syndrome ‒ and follow-up tests such as amniocentesis and chorionic villus sampling (CVS) that can give a diagnosis with 100% certainty.

Amniocentesis involves using a needle to extract and examine a sample of amniotic fluid, which surrounds the baby in the womb. With CVS, a small sample of cells is removed from the placenta (the organ linking the mother’s blood supply with her unborn baby’s) and tested.

Regardless of when the diagnosis happens, or indeed, whether it’s positive or negative, Rick and Abbie believe that sharing their journey can offer hope and encouragement to parents who are going through what they went through. In other words, parents who are scared, confused and looking for more information. But also parents who want to celebrate the new life they’ve created.

“If you are anything like I was when our son was born you are probably going ‘google crazy’ trying to find some information to help you understand what Down syndrome is all about,” Rick writes. That’s why they’re compiling the New Parent Guide to Down Syndrome, which Abbie is writing and posting on the blog in sections. It’s a one-stop resource for parents who are likely feeling overwhelmed and may not know where to turn for accurate information.

Between the videos, the blog and the guide, Rick and Abbie are helping parents to inform themselves about Down syndrome, as well as providing a huge amount of comfort.

“My hope is that by making some of the unknown, known; the unknown becomes less scary for you. My hope is that you’ll see our life is much more normal than ‘un-normal’,” says Rick. “My hope is that as people watch our son grow up, they’ll see that our story isn’t nearly as scary (or sad) as many people believe.”