Saturday, April 07, 2007

Yes, about those numbers....

Someone anonymously posted a comment on this post, with no other note, so I'm not sure why? Next time leave a name, my dear, I don't bite...

What I wrote was this, "Our babies deaths rank lower on the pyramid of pain than any other deaths. You quoted a study a while back that said 31,000 babies were stillborn in the US every year. I don't even know the number in Canada, because we don't even publish it every year. (We publish the number of potatoes we grow every year, but not dead babies.)"

Anonymous said...

April 06, 2007 8:06 PM

Now, if you click on the link you will discover a report from Statistics Canada on Stillbirths. Only problem is that it is totally inaccurate, which is why I made the point that we require precise counts on crops we produce, down to the bushel, but don't count medical events like dead babies.

Inaccurate, you say? How so?

Well the legal definition of a stillbirth in Ontario, here is defined as 20 weeks gestation or over 500 grams in weight. This is the same in almost every other province, and most other states...some vary the number of weeks or weight, but the gist of it is that everything over that "counts" and everything under that has no existence.

That StatsCan table is for stillbirths over 28 weeks, a completely different criteria, therefore useless, for comparison value with other countries and provinces. It also does not distinguish between medical terminations and natural stillbirths, important because prior to the advent of prenatal diagnosis, medical terminations at that stage were only done if a woman was too ill to continue on, or wished to end the pregnancy voluntarily. This lack of distinction makes historical comparisons for public health purposes impossible.

Last July a couple of stories like this one here publicized this problem, it's behind a firewall, sorry, but you can purchase a copy, or get it from a university with a subscription. The quick summary is that thousands of births, stillbirths, and infant deaths have gone undocumented in the last 15 years in Ontario because of some major screw-ups in the office of the Registrar-General. And since Ontario is the largest province in Canada, all of the maternal-fetal health stats in Canada are skewed as a result. Which messes up the stats for the entire western industrial world. The government is now attempting to go back and fix this, but it's a big job.

(In case my non-Canadian readers are wondering why this happened, we stupidly elected an extreme right wing guy named Mike Harris at one point, and he imposed excess fees and paperwork for birth registration, (along with other excess fees for every damn thing you can think of from driving your car to paying your electric bill) so he could cut our taxes. Long story short....we're still trying to unfuck the mess....)

Back to our main point, since the invention of ultrasound, most people find out about miscarriages, fetal anomalies, and just about everything prior to 20 weeks. But that doesn't even get counted.

No one even counts those pregnancies, those losses, nothing, nada, zip, zilch.

And when the line is fuzzy, when the numbers aren't precise, when the weight is little low, the Doctors quite often ever so helpfully don't bother the parents with the paperwork. You see, stillbirths, live births and deaths requires HORDES of paperwork. And losses under 20 weeks, require none, except for the bill of course. So it looks like the rate of stillbirths is holding steady or dropping, when in fact, we're just discovering the losses earlier.

In my ideal world, public health and agencies like StatsCan record every positive beta, track the course of every pregnancy and every outcome. Whether that outcome is a joyful one or a sad one, the gestation, any health events connected to the mother and father are simply recorded. (Yes, even the ones that end in clinics with teenagers crying and praying their parents never find out.) Privacy legislation has been in effect for years so that names and identifying info is separated from health records. We do it for hip operations, cancer tumours, learning disabilities, chicken pox, literally every health event under the sun...except for this.

Why should this be counted to?

Because it's damn hard to solve a problem when you have no idea how big it is.


  1. I agree with you that all the information should be recorded for statistical purposes so that trends can be observed and prevention/treatment activities can be planned. From a purely definitional point of view, how is a miscarriage differentiated from a stillbirth or is it? I am guessing it has something to do with the gestation period but not sure. Thanks!

  2. Woah. That is frustrating. Abhorrent, actually. Goodness knows it was hard to sign the paperwork after Natan died, but the social worker at the hospital made it as easy as possible under the circumstances. I would certainly have rather gone through that bureaucratic misery than to think his death wouldn't even be recorded - that statistical data wouldn't even exist.

    About the "anonymous" poster. You won't say it but I will. It was rude to make an attempt to contradict you without a comment.

  3. Leroy,

    A live birth is a baby born at any gestation, that takes even one breath, or moves voluntarily, at any gestation, and yes, it can happen as early as 16 weeks according to nurses and Docs I've spoken too, who have witnessed it. The baby would of course at that gestation die immediately, but it would still be a live birth then death and recorded as a neonatal death.
    A baby born dead or delivered dead by surgical means below 20 weeks, or 500 grams weight is a miscarriage, and above that "line in the sand" is a stillbirth.

    It was picked about 100 years ago in various jurisdictions based on the traditional concept of "quickening", the moment when a babies movements could be seen from outside the mother's body.

    And Sara, thank you for are probably right, but I'm hoping they were a shy lurker trying to be helpful. It's Easter, gotta try, right? *Sigh*

  4. In my ideal world, public health and agencies like StatsCan record every positive beta, track the course of every pregnancy and every outcome.

    Eee. Maybe I'm just speaking from my US perspective, but this squicks me out immensely. I don't like the idea of a national crotch watch.

    I understand that there's a need for better data on early pregnancy loss, but I don't think surveillance data is either necessary or sufficient for understanding the etiology or potential prevention methods for miscarriage. For gaining funding? Maybe, but there are other ways to build a solid case for funding needs than requiring every woman's uterus to undergo governmental scrutiny.

    You have to understand, this kind of legislation has been proposed in a couple states in the US and it was ALWAYS a cover for shaming women seeking elective abortion.

  5. Sorry Casey, I always forget the paranoia from US readers! I don't ever have to worry about that here, so it becomes kind of pointless.

    Plus from a government funding perspective, we already pay for hcg tests, and track pregnancies with a special program used for health records. They just never get to research hands.

    As for the "national crotch watch" (funny joke, btw!) you already have that in the US and we do too. STDs are tracked for public health as reportable illnesses, as are many other things. Plus your insurance/medicare tracks it all for payment.

    I do know what you mean though, *sigh* I hate having to feel "on alert". It's just that every damn time I try to show it's an issue, and can't produce accurate numbers, politicians blow me off...I don't know what else to do.

  6. Well, STD reporting is a little different than what you're proposing. We track incidence, meaning physicians report the number of chlamydia diagnoses they made in a certain time period. You're suggesting monitoring individual pregnancies, which would require some kind of identification system. That's what squicks me out. Kind of like Big Brother is watching. . .your underwear.

    Of course, reproductive health is a whole different ballgame in the US, from what I can tell. So, you know, we're a little leery this side of the border.

    (Also, I totally hear you on the funding issue. I work in prevention research. Without saying anything to jeopardize my job, I'll just say that the priorities of the US government never cease to amaze me.)

  7. Ahhhh, things really are different then. Here, names are reported to Public Health, and people are interviewed asking for names of partners so the spread can be prevented.

    For other things like cancer tumours, again names, pathologies, etc...are all reported to agencies like Cancer Care Ontario to track environmental contaminants, treatments, etc etc.

    But again, as soon as the pertinent medical info is gathered names are disconnected completely, deleted under pain of criminal prosecution, so that we can use the info for prevention research and health planning purposes.

    And like I said, you guys in the US DO monitor individual pregnancies, for billing purposes. As we do for OHIP, I just want the researchers to treat pregnancy like any other health event, a normal part of life, y'know? Not some special weird secret thing.

    (Now I love the word "squick" hehe)

  8. Thanks for the comment on my blog. I live in Burlington, so TO is bit of a drive for chiro but if you know anyone in Halton I would happily take that name. And hey, if this gets worse as time goes on, a 50 minute drive might not seem like such a big deal anymore!

    I had no idea that our recording of still birth/pregnancy loss is so messed up. There is so much that our government could be doing to help with this issue and infertility. I will be following your blog closely, I love challenging the political process.

  9. The gathering of accurate statistics on all sorts of infant loss is a little sketchy, even in the US. There is also the lack of protocol. I have been questioning the data I have seen of micropreemie survival rates. There are no good large scale studies, and most of them are skewed to the "success" rates of hospitals with very sophisticated NICU's which is hardly representative. I also once asked someone who is well versed in these studies, if the stats for micropreemies include babies like mine where resuscitation was never even attempted- a "delivery room death" as it is generally called in preemie literature. She said its questionable. She said some are, some aren't. So that right there is completely skewing the numbers making the survival rates higher than they probably really are.

    Anyway... I hear you, and I'll save my soapbox speech for my own space. But you go girl!!

  10. I'm with you, Aurelia, of course all public health information needs to be tracked. I'm not sure what the situation is in the UK but I get the impression this stuff is tracked fairly carefully by the NHS. I will check.

  11. It seems an independent body has been set up in the UK to track perinatal health and maternal health, but it does not look at miscarriage stats:

  12. Dammit, Aurelia! I had plans for today. Plans that included wasting time on my couch with nachos and SpongeBob. Now, I feel compelled to research partner notification and contact tracing policies in the US. (I'm pretty sure it varies by state.)

    I'll let you know if I find anything interesting.

  13. Thoroughly enjoying the discussion between you and Casey. Geese, I do love stats.

  14. I know that public health agencies in Wisconsin get the names from clinics of people who are identified with a STD and that they are questioned about partners so that they can be treated. Prevention is a primary role for Public Health.

    Thanks Aurelia about the definition of miscarriage, live birth and stillborn...all of which I think should be tracked if it isn't...and I can find out if it is here in Wisconsin pretty easily.

  15. Your post also brought up another issue for me. I often wonder why it is that the vast majority of society is quick to apply significant emotional support to parents who lose and bury a child but dismiss the loss of a much sought after baby in the fragile early months as though if there was no actual birth certificate the baby-to-be didn't "count." Loss is loss and grief is grief in my book. There's no way to qualify it or apply a weighting over who is suffering more or less.