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Language Issues

3/6/2016

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I'm very proud to be from a province that is the first province or state in North America to create legislation for pregnancy and infant loss. And now, the first province or state to allocate funds ($1 million) in the provincial budget to further research and education awareness of pregnancy and infant loss.

I was very fortunate to receive excellent care during and after the loss of Ryan. There are some areas I'm hoping to bring greater awareness to in the future, but in the grand sense of compassionate and thorough care, I've been treated with amazing attention and sensitivity.

The most concerning area for me at this point, is the language that's used in healthcare to describe the loss of a baby before he or she is born. Let me explain.

About 3 or 4 weeks after Ryan was born, I felt a great sense of urgency to apply for his birth certificate. So I went online and found the info for requesting a birth certificate. One of the questions asked if this person was living or deceased. I selected deceased and was informed that "short form birth certificates" (the little cards for your wallet) were not issued for deceased persons but that I could get the legal "long form" document. This was fine. I just wanted something official with his name on it. So I paid the $35, filled out the next of kin letter, completed the application, and sent it away. 

About 2 months ago, I realized I still hadn't received anything. So I began to do some investigating. 

As it turns out, Ryan doesn't "qualify" for a birth certificate. Birth certificates are technically documents that certify a "live birth." This obviously doesn't apply to my Ryan. The healthcare community (and subsequently the government) does not view my baby as ever having lived, so there is no documentation of him ever being a living person. (Ouch. I suppose the 9 months of heartbeats, ultrasounds of Ryan trying to "play with" his umbilical cord, and nights on the couch spent watching my belly move don't count as living). What I needed was a copy of his "Statement of Stillbirth." (As an aside: None of this information was delivered to me by the Government of Ontario. As far as I know, they received my application and my $35, failed to find any information about a Ryan Russell and went back to work on something else, failing to contact me or refund my money.) But anyway... back to the internet I went to find out exactly how to get my hands on his Statement of Stillbirth.

What I found made my stomach so queasy I quit my search and never ended up applying. I stumbled across a blank copy of a form we filled out (in a daze) at the hospital on September 7. The Ontario Statement of Stillbirth form. A form which defines a stillbirth as "the complete expulsion or extraction from its mother of a product of conception either after the 20th week of pregnancy or after the product of conception has attained the weight of 500 grams or more, and where after such expulsion or extraction there is no breathing, beating of the heart, pulsation of the umbilical cord or movement of voluntary muscle." The form goes on to reference "ordinary births" and how in such cases the "child's mother and father must normally register the birth..."

I basically read this and let out a huge "What the Fuck?"

Ryan was not merely a "product of conception." He was a baby. I don't care if he was 10 weeks, 20 weeks, or 40 weeks. He was a baby. And guess what else? My birth was pretty ordinary. I gave birth to him just like any other mother gives birth to her baby. I felt every contraction. Every push. Every bit of him emerge. He just wasn't breathing through it all. So what makes him less of a child than a baby who breathes? He had ten fingers. Ten toes. A full head of hair. Two chubby and kissable cheeks. A sweet little chin. Every organ a human being has...

The fact that in the medical profession we can't refer to my baby as a child or a baby, but as a product of conception or a "stillborn" awakens a very angry mama-bear inside of me. 

There are great complaints out there that pregnancy and infant loss are taboo topics, and a grief that we're supposed to deal with quietly so we don't upset too many people. Fortunately this has not (really) been my experience. But I think a failure of the healthcare community to recognize these losses on paper as BABIES, is a contributor to that. No one wants to think about babies dying. But it happens. And great care and support from our doctors and nurses is one thing, but for me to go out into the "real world" and find all over the internet this failure to acknowledge my baby as a human being is quite disheartening.

We need to change our language. My baby died. His human heart stopped beating one day before his due date. He was a person. A baby. My child.
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