Wednesday, April 2, 2014

Questions and Answers

When Kayleigh and I first announced that we were expecting, we probably never went more than a couple of days without someone recounting their own experience to us. There was quite a range: Pregnancy is wonderful / Pregnancy is difficult ; giving birth is an incredible experience  / giving birth is incredibly hard; holding your baby for the first time is a magical experience (there seemed to be consensus on this one). 

Only after losing Anya did we start hearing about the other kinds of experiences - ones that people don't readily share with beaming parents-to-be. Stories of similar losses. Stories of miscarriages. Close calls at birth. 

In the days and weeks that followed our loss, there were a number of questions about loss which I had never really paused to consider. Questions I probably never wanted to consider. But questions worth exploring nonetheless.

Here's the first one I asked:

How often does this happen? How often does an infant who showed no irregularities prior to labour die shortly after birth?

According to the 2013 Perinatal Health Indicators for Canada (kindly provided to me upon request by the Public Health Agency of Canada), 3.6 infants per 1000 live birth die within the first 27 days - dubbed neonatal deaths. That's a 0.36% death rate, leaving us excluded from 99.64% of surviving babies.

But this does not actually represent the number I'd like to know. This represents all live births, including cases where babies had identified health problems, or were premature. To try and get a bit closer, we can look at the proportion of deaths by cause:

Depending on the source, Immaturity appears to be classified as under 24 weeks (according to the ICE grouping cited in the Perinatal Health indicators), or 2500g. Anya did not meet either of those categories. 

At this point, it is still difficult to rule out other causes of death (apparently 3.5 months isn't enough time to provide autopsy results.. but that's another story) - Still, this graph helps rule out the top cause, and 38% of deaths, leaving us with a number of 2.232 per 1000. 

For whatever reason, there were data quality concerns with the numbers from Ontario (which was therefore excluded), but even without Ontario, there were approximately 240,000 live births in Canada in 2010. 0.2232% makes over 500 similar deaths per year (and over 850 total neonatal deaths).

That makes for a remarkable amount of heartbroken parents every year. More than I could have thought.

That number opens the door to many more questions - questions that can't be answered with these particular data tables. 

How many of those parents went on to have healthy children? How soon afterwards? How many of those parents had to relive a similar experience multiple times? What is the rate of depression of those parents, compared to the general population?

Statistics can be great. They can provide an indication of how things will likely turn out, and perhaps take a bit of fear out of the future. But lets be honest - even if we had those numbers, we might have some trouble having much faith in them. That's the unfortunate effect of being on the wrong side of 99.77%.

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