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What I Realized on the Road to Canadian Legislation After My Son's Down Syndrome Diagnosis

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I struggled for months during my pregnancy navigating my way through the layered Canadian/Ontario medical process a family can experience after receiving their prenatal screening results of Trisomy 21/Down syndrome. We are sadly one of the families that has a horrific recall of events that unfolded along our prenatal journey.

I morphed into an absolute, emotional basket case shortly after receiving our second round of blood work, the more intensified round, that had us at a statistic of 98-99% likelihood of carrying a child with Down syndrome after receiving our “high risk” results
of 1:250 in the first round of prenatal screening.

After the phone call came in from our doctor that the results were confirmed “screen positive” for Trisomy 21 on our NIPT test, we were redirected to specialized hospitals near Toronto for more advanced testings along with genetic counseling. This would be our first real-life encounter of another human openly expressing to us that our unborn child would be a “burden” to our family, and to expect very little from his life. We were asked to deeply consider what our future would be like if we were to pursue our pregnancy.

Aside from the constant tears and trauma we were battling through during these painful appointments, just the mere thought of any human especially in a professional position devaluing the life of any being without updated balanced or first-hand information being given to our family completely sickened us. The natural reactionary questions began to surface:

“What do you mean a “burden?””

“What defines a burden to you?”

“How do you know our son will not amount to anything?”

We thought, “How can this be happening to families here in Ontario?”

Shortly after Harvey was born, I began to immerse myself into as many Facebook community groups as possible relating to Down syndrome. Every single prenatal diagnosis story caught my eye and had my full attention. Reading the first few sentences into a majority of the prenatal stories from around the globe instantly turned me into a complete puddle, but one common theme emerged: we were not alone in Ontario, Canada receiving the news that our son would be a “burden.” The issue of some medical professionals devaluing our unborn children with Down syndrome was happening across the globe. I realized movements had started, awareness groups garnering thousands of followers around saving Down syndrome had exploded, hashtags all over Instagram #lifeisbetterwithyou
#inclusion #embracedifference were trending, other Down syndrome advocates had devoted their time in passing PRO information legislation in 18 out of the 50 states in the United States. This was widespread. Wow, this became very real and inspiring. Every
internal instinct and fiber from my inner being was screaming, “How can I help my new lucky few family with this movement”?

I have been an active, local, elected politician for over six
years here in Ontario with a huge passion and thirst for politics. While holding our precious, beautiful boy in my arms,
my mind would routinely drift into politician mode, wondering what was our policy here in Canada? What is our process or do we even have a consistent process? Is anything legislated on how we inform families of their NIPT test results? Yes, my husband would continuously give me the “eyes” look but I couldn’t shake the feeling that the system, the process here had failed many families and needed to evolve on how we deliver a prenatal diagnosis and NIPT test results here in Canada.

A meeting was first arranged with my local MP who guided me
on the path of understanding all medical decisions to this nature defers to each Province so with my many Google searches I soon realized this: In Ontario, after our last election, we have 124 Elected Members of Provincial Parliament, 40% are female, 73 Conservative, 6 Liberal, 40 NDP, 2 Independent, 1 Green, a couple vacant seats and all we needed was just one voice to represent our lucky few family.

Over the next 12 months the search was on, would we be able
to find one voice? I connected with some brilliant souls who were equally passionate about evolving our current process on how we deliver a prenatal diagnosis of Trisomy 21 to families and a draft legislation piece was created. A real draft of a potential, future bill was created. This was a very cool moment! The draft highlights how each family, no matter their geography in Ontario, receiving their NIPT screen positive results will receive the same, consistent, Ministry approved information piece with up to date information about Down syndrome, resources available in Ontario and providing appropriate information to families to help connect families to their local associations.

For months we traveled to various parts of Ontario meeting
with MPP’s and calling ourselves, “The Legislation Ladies” and we soon realized we were gaining some momentum, new advocates were joining our journey to help and maybe it was time to legitimize our name.

This shared feeling birthed the name, Perfectly Me, our little grassroots group now had an official name! Perfectly Me embodied everything we were advocating so hard for, that each and every single one of us in this world is our own kind of perfect – we are all perfectly me and should be so embracing of everyone’s beauty and personal uniqueness.

We sat down and met with dozens of elected Ontario MPP’s, discussions with professional lobbyists, Down syndrome associations from across the Province and with our Canadian Down syndrome Association. This is when pure magic began to flow, families began to share their stories with us, still recalling all their emotional and painful details, we received messages from across the Province from all corners asking how their family could help us with our initiative. We had families connecting with their local MPP’s to set up meetings, we started a letter writing campaign with our Ontario Provincial Association which sent hundreds of letters to our Minister of Health, our lucky few family showed up! We were all in this together! We received letters of support from NDSS and other DS Advocacy Groups from overseas. Our family was out in full force to support this initiative here in Canada.

Almost two years later, with endless hours on the back-end trying to figure out the best way to get this legislation piece passed and many conversations around feeling very defeated with the political process and the time it was taking, we finally found our one voice, the search was finally over.

We met with the beautiful and well respected, MPP Sara Singh, who is coincidentally connected to our lucky few family, she has a sister with DS. Hearing her talk gave us instant goosebumps, her light is brighter than anything I have ever seen, for those with strong opinions towards politicians Mrs. Singh is like no other. This one voice gave our little grassroots group so much hope, gave us a reason to continue our fight, to see this initiative cross over the finish line and to never stop dreaming big. This one passionate voice has agreed to present our legislation piece as a Private Members Bill at Queens Park before the end of of the year. It is really happening, our dreams are coming true, our voices will be heard and our stories will be told!

The conversations at Queens Park will begin, this could be the first legislation piece in Canada pertaining to how we deliver a prenatal diagnosis of Down syndrome and NIPT test results to families. Wow! The thought of one day knowing, that maybe soon, a families prenatal journey could be positively impacted from all the efforts in our community, by coming together, standing together, and supporting each other brings the feeling of  joy and gratitude to an entirely new level.

We will do whatever we can to pack Queens Park with lucky few
families and supporters here in Ontario the day Mrs. Singh presents the Bill, so please help us spread the word, our little group often says, #OntarioFirst in a joking but not-so-joking manner when we talk about the future of our legislation advocacy efforts across Canada. Because I think deep down we know the truth is, Ontario is our first stop, but not our last!

“Alone we can do so little, together we can do so much” ~ Hellen Keller


Photos submitted by contributor.

Originally published: June 1, 2020
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