Why we decided to have a baby with Down syndrome

NZ Herald 24 March 2018
Family First Comment: “Like many parents of children with Down syndrome, McDonald is concerned about the way the diagnosis is presented to families. “I don’t have anything to say against testing because it prepared me for the birth of my child. I guess what I have an issue with is what information people are given when they are encouraged to have a test and when they get the diagnosis. Most of it is about everything that could be ‘wrong’ with our children. Imagine if we did that with every diagnosis. I think everyone has a right to have a test and a right to make their own decision, but it’s about information.””

Auckland parents Kirsten McDonald and Philip Venables found out their unborn baby could have Down syndrome after the 12-week screening offered to all expectant mothers in New Zealand. They decided to find out for sure with an amniocentesis test.

McDonald says the doctor who delivered the news asked her to look at the piece of paper with her name and the result, confirming their child had Down syndrome. “Then [her] next words were, ‘You’re going to have a beautiful baby boy.’ That still stays with me, those words from her. She just reminded us that first and foremost, we were going to have a beautiful baby boy, rather than saying, ‘Oh I’m really sorry’ or even words like ‘but’.”

Thirteen weeks later, baby Joshua was born.

At 39, McDonald knew her age would increase her baby’s chance of chromosomal abnormalities like Down syndrome, but when she had the 12-week test, the chance showed at one in 80.They’d decided to delay the amniocentesis until she was 25 weeks, because for them, it wasn’t a question of whether to continue with the pregnancy, but of wanting to prepare themselves.

“Every time we had a scan we were told the risk had increased. We just needed to know so I could enjoy my pregnancy, rather than spend the next 15 weeks being stressed.”

The test was conclusive, so they met with families of children with Down syndrome, and did plenty of research. “By the time I had Joshua we were just so ready to meet him and not have this abstract diagnosis of Down syndrome. We just wanted to meet our boy. There was no shock or worry or trauma. It does have an impact on him and I wouldn’t change him for the world. If we could take away the Down syndrome, no way, that’s what makes Joshua who he is.”

But like many parents of children with Down syndrome, McDonald is concerned about the way the diagnosis is presented to families.
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