Understanding children are perfect as they are

I recently read an article reporting the reduced incidence of live births of Down syndrome across multiple European countries, attributed to increased pre-natal screening. My youngest son was born with Down syndrome in 2015, so you may imagine this kind of statistic is difficult for someone like me to learn about.

Another article published a few years earlier reported the very low number of Down syndrome births in Iceland – only three in 2009 – and described the country as coming close to “eradicating Down syndrome births.” I can’t help but wonder why is Down syndrome something anyone would want to eradicate? Down syndrome is nothing new. Even in ancient Rome, there is evidence of beautiful art depicting Down syndrome.

The Canadian Down Syndrome Society shares the following facts about Down syndrome on their website:

• Down syndrome is a naturally occurring chromosomal arrangement
• Down syndrome occurs in one of every 781 babies born in Canada
• Individuals born with Down syndrome may have some intellectual disability, delay in development, or characteristic physical features
• While there are some health concerns associated with Down syndrome, these health issues also occur in individuals without Down syndrome and can be successfully managed and treated

The Canadian Down Syndrome Society also advises parents to think of their baby born with Down syndrome as a child first, and to consider their diagnosis as just one part of who they are.

Maybe I was lucky to have had (mostly) good doctors and nurses from the very beginning. I cannot deny that the way they spoke to me influenced how I felt about unexpected news. I am thankful for the way in which they empowered me with their respect to make my own choices and acknowledged their own human limitations in predicting the future.

Disability has long been considered a reason to grieve. The word itself carries a negative connotation, suggesting the absence or deficit of a desirable quality or ability. In the past, parents of children born with a disability have been described as being in a state of grief, mourning the loss of their so-called “perfect” child, and this interpretation has been traditionally accepted without critique.

What does “perfect” even mean? Maybe a perfect child is simply exactly who they are. I think it is ironic researchers have found that parents of children born with a disability report feelings of joy from their life with their child, but sorrow from their experiences with professionals and others. I know exactly what they mean.

Of course, I was surprised to receive my son’s diagnosis. But I was also relieved to learn that he was healthy. Down syndrome does not mean disease. So many people spoke to me afterwards as though my son was sick, or had a bleak future, or would tragically die young.

What is a parent supposed to do with that? Most of the time I would be too stunned to react in the moment. Most of the time I let their words hurt me. Most of the time I needed distance, and a call to my mom, to shake off their ignorance. At that time, all anyone ever needed to say to me about the birth of my new baby was, “Congratulations.”

I suppose it is human nature to fear what we do not know or understand. I wonder how often our fear is really just a reflection of our lack of knowledge. I certainly didn’t know anything about Down syndrome before my son was born. Now I know he is one of the three best things that has ever happened to me. He makes me a better parent, and a better human. His diagnosis certainly does not make me feel any more or less sure of his future than his brothers’ futures. I worry about all of them equally.

I smile wide whenever I recall the young man born with Down syndrome, Fionn Crombie Angus, who introduced a keynote speaker at the International Association for the Scientific Study of Intellectual and Developmental Disabilities virtual conference this past summer, when he said: “499 out of 500 parents suffer from a lack of Down syndrome.” Isn’t that the truth?

(Maria Baranowski is a PhD student in the department of community health sciences at the University of Manitoba where she is a sessional instructor in human nutritional sciences.)