4,000 women are missing from the MANA statistics paper; where did they go?*

the missing piece

Geradine Simkins, President of the Midwives Alliance of North America, July 2008.

MANA estimates approximately 20,000 cases will be in the database by the end of 2008.

Peggy Garland, MANA Director of Research, November 2009:

I am pleased to announce the availability of data from the MANA Statistics Project. We have completed review of almost 13,000 records from late 2004 through the end of 2007…

… [W]e expect another 10,000 records will become available for research, spanning 2008-2009.

Melissa Cheyney, August 2011:

The MANA Stats project currently has over 600 active contributors … and our database contains over 27,000 records and counting …

MANA Stats webpage, now:

The MANA Statistics Registry (“MANA Stats”) has gathered has over 24,000 records in the initial (“2.0”) dataset (2004-2009) …

Here’s part of the explanation, accounting for approximately 4,000 women:

Development and Validation of a National Data Registry for Midwife-Led Births: The Midwives Alliance of North America Statistics Project 2.0 Dataset, January 2014:

In 2004, the Midwives Alliance of North America’s (MANA’s) Division of Research developed a Web-based data collection system to gather information on the practices and outcomes associated with midwife-led births in the United States…

The 2004 to 2009 MANA Stats 2.0 dataset includes data from a total of 24,848 courses of care. The sample for the analyses reported here is restricted to 20,893 pregnancies in which women were planning a home or birth center birth at the onset of labor. These pregnancies included 66 sets of twins for a total sample of 20,959 newborns. Excluded from our sample are 521 women who were not planning a home or birth center birth at the onset of labor, 3434 women who transferred care to another provider prior to the onset of labor for either medical (eg, a complication requiring obstetric specialty care) or nonmedical (eg, woman moved during pregnancy) reasons…

The geographic distribution of the births included 35.7% in the Pacific states (Alaska, California, Hawaii, Oregon, Washington); 23.4% in the West (Arizona, Colorado, Idaho, Montana, Nevada, New Mexico, Oklahoma, Texas, Utah, Wyoming); 14.8% in the Midwest (Illinois, Iowa, Indiana, Kansas, Michigan, Minnesota, Missouri, North Dakota, Nebraska, Ohio, South Dakota, Wisconsin); 10.8% in the Southeast (Alabama, Arkansas, Florida, Georgia, Louisiana, Mississippi, North Carolina, Kentucky, South Carolina, Tennessee, Virginia, West Virginia); 10.0% in the North Atlantic states (Delaware, New Jersey, New York, Maryland, Pennsylvania, Washington, DC); and 5.3% in New England (Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, Vermont). [my emphasis]

Outcomes of Care for 16,924 Planned Home Births in the United States: The Midwives Alliance of North America Statistics Project, 2004 to 2009, January 2014:

The complete November 2004 through December 2009 MANA Stats 2.0 dataset (N = 24,848) includes records from all women receiving at least some prenatal care from contributor midwives. For the purposes of this analysis, we excluded women who transferred care to another provider prior to the onset of labor, women who at the onset of labor had a planned birth location other than home, and women who did not live in the United States. Thus, our final sample for this analysis consisted of all planned home births (N = 16,924).

We already know from the companion paper that 20,959 newborns were left after excluding 521 women who were not planning a home or birth center birth at the onset of labor and 3434 women who transferred care to another provider prior to the onset of labor. Moreover, according to the companion paper, 100% of the women in the studies lived in the US. How, then, could nearly 4000 additional women be excluded for not living in the US?

Unless MANA accidentally misrepresented the number of women in the study or the number of women excluded, they appear to have left out nearly 20% of the patients in their database.

Why?

And what would that data show if it were included?

 

* A commentor pointed out that the difference may be that the first paper includes birth center births, while the second paper excluded them. That would make sense. However, it doesn’t explain why they claim to have excluded women who lived outside the US even though the first paper indicates that all the women lived in the US.

If the women excluded from the second study were women who gave birth at birth centers, a comparison between outcomes would have been useful. It’s curious that they didn’t include it.

  • prolifefeminist

    “Excluded from our sample are 521 women who were not planning a home or birth center birth at the onset of labor, 3434 women who transferred care to another provider prior to the onset of labor for either medical (eg, a complication requiring obstetric specialty care) or nonmedical (eg, woman moved during pregnancy) reasons…”

    I was part of the MANA stats and I transferred care from my CPM to an OB at 42w2d. I was attempting a VBAC at home (I know…I cringe when I write that), and when I didn’t go into labor by then, I transferred and ended up with a repeat CS after a failed TOLOC. So I guess I would be one of those 3434 women excluded from the MANA stats project.

    So here’s what I’m wondering…how many of those 3434 who transferred prior to labor had poor outcomes due to crappy monitoring, etc by the CPM that were not counted in the MANA study?

    For example: I developed hypertension the last week before I transferred to an OB. When my BP started rising, my CPM didn’t check my urine for protein or send me to the OB for labs or anything to r/o preeclampsia (her advice was to use Rescue Remedy, drink a potion of cream of tartar and lemon juice, and I forget what else. Pretty much everything but take it seriously). So – what if I’d had a poor outcome after transferring to the OB because the midwife ignored signs of pre-e? (and btw, I did develop severe pre-e in the next pregnancy at 31 wks, leading to an immediate c/s – so who knows if I was on my way to full blown pre-e with the previous preg). If I showed up to the hospital under OB care to be induced and had pre-e and a bad outcome, that would count against the hospital stats, right? And be totally excluded from the MANA study altogether.

    I just don’t understand why those women were excluded completely, because it seems that they would shine some light on the quality (or lack thereof) of CPM prenatal care and monitoring. I mean, if a higher-than-average percentage of an OBs patients that transfer to a MFM specialist experience serious, potentially preventable complications, it’s fair to question whether the OB isn’t very good at spotting potential problems before they become catastrophic. Especially if the OB claims to manage only low-risk patients to being with.

    Sorry for the rambling post – I’ve got kids tugging on my arms and it’s hard to organize my thoughts coherently!

    • Young CC Prof

      You are absolutely right. Unfortunately, I suspect that not only were they excluded from the study, MANA simply has no data on most of them. The midwife had no reason to follow up.

      What’s even worse is the exclusion of approximately 1700 women who transferred DURING labor. I would imagine there were quite a few easily preventable bad outcomes in that pool, but we have no way to find out. If their babies died, they died in the “hospital” group, even if the baby was already beyond help the moment the mother entered the door.

  • no longer drinking the koolaid

    I contributed to MANA stats. 400 births between my birth center and home births. However, when I stopped drinking the koolaid I wrote to tell them I would no longer be contributing and they were not permitted to include any of the stats I contributed. If I include the women who chose or needed to transfer care before labor, of who I risked out that would be about 30-40 more.
    I never heard back from them.

    • maybe you needed the koolaid

      you sound crazy. why were you doing homebirths in the first place?

    • no longer drinking the koolaid

      “maybe you needed the koolaid”, for some reason your post is not active, but this reply is to answer your question.

      That’s one of the things I appreciate about Dr. Amy and how she moderates these comments. She does not censor the trolls.

      In
      answer to your question: a synonym for crazy is insane. One definition
      of insanity is doing the same thing over and over again and expecting
      different results. Some people, including many on this page, have found
      their way out of the craziness of the home birth and NCB communities.
      It means being able to mature and admit that you may have been wrong.
      Isn’t that what the NCB community asks of physicians and hospital staff
      when they perceive their actions continue to harm women, or when they
      aren’t practicing NCB? Does this mean that you think being able to
      change will only lead people to NCB, but not out of that craziness?

  • Captain Obvious

    Are these 4000 women from Portland? Because, you know, when you exclude Portland, the Homebirth outcomes are safer.

  • Dr Kitty

    OT England is about to implement some software that is going to link up hospital care with primary care.

    I have a feeling that the real world data that will be collected about unintentional home births, home births maternal morbidity and neonatal outcomes will make interesting reading.

    You can only audit what you are aware of.
    If an infection is dealt with by the GP after the midwife stops visiting, the midwife won’t know.
    If the baby ends up in hospital after the midwife stops visiting, the midwife won’t know.
    If the GP refers the woman for PPD, or pelvic floor physio after the midwife stops visiting…you get the idea.

    The software would link up hospital visits, GP and community care and could be a very interesting way to benchmark and audit practice.

  • Amazed

    Dear Jen is at it again. Can’t stand this self-righteous *expletive* since she declared she would not feel guilty if her little potential disease-carriers infect someone with a vaccine-preventable disease resulting in damage and death. Not that she wanted to sound selfish, of course!

    Welcome to the wonderful world of Jennifer Margulis, homebirth advocate and potential killer with no remorse. I know many of you have been there before but it’s a morbidly fascinating place.

    http://www.jennifermargulis.net/blog/2014/01/theres-no-place-like-home-why-having-a-home-birth-is-a-good-option/

    • Amy Tuteur, MD

      Ooooh, she included the entire press release in her blog post as if that was consistent with good journalism. The woman is an ignorant hack.

    • Amy M

      Another one who doesn’t understand rates….she did mention the death rate, or one of them anyway (the 1.6/1000, I can’t remember which ones that included), buried in the text, and claimed it was low. Since she doesn’t mention the 0.38/1000 of comparable hospital death rates, sure it doesn’t look TOO bad, I guess, if you are more concerned with breastfeeding.

      • Amazed

        Actually. I don’t believe she doesn’t understand them. I think she just likes to pretend they don’t exist. I mean, every person with average intelligence can realize what rate means. But it’s easier to hide them in the text. Just like it’s easier not to count Portland, I guess.

        But then again, i am a great believer in human intelligence, so who knows.

    • auntbea

      “Pitocin used as extreme intervention” What is an “extreme” intervention? It is extra spicy, or something?

      • its when you get an intervention while skateboarding (or drinking mt dew)

      • Trixie

        It’s when you kayak through a convenience store while giving birth.

        • auntbea

          Wait, what? Why is the convenience store flooded?

          • Trixie

            Harold and Kumar reference.

      • Amazed

        Extreme intervention? Everything Jen and her pals don’t approve of. In other words, everything Missy Cheyney can’t do. (Sorry, Bofa, I had to steal your explanation. It’s one of the best I’ve seen around here.)

        • auntbea

          I maintain that they have just confused “pitocin” with “picante”.

    • moto_librarian

      But never mind those dead babies, right Jennifer? Because for all of her crowing about “physiologic” birth, low c-section rate, and low interventions are a bunch of tiny coffins. We also have no idea how many children are suffering long-term damage from home birth gone wrong, but let’s conveniently forget to mention that.

      And pray tell, how much money is Jennifer making from her book? I thought only OBs stooped to the level of expecting money for their services? Oh wait…

      • Amazed

        Ah moto! Jennifer is a birthworker. As we saw by the results of the MANA study, birthworkers serve their own profit faithfully. They also serve birth. What, you thought they served babies? Poor moto. Babies are kind of birth accessories – sure, it’s nice to have one retain life and full functionality but it not… Shit happens. Babies die in hospitals too.

      • Amazed

        We don’t even know how big this bunch of tiny coffins is. Thank you oh so much, MANA, for publishing this pearl of a study. You’re so very helpful.

        And Jen, thank you too. Walk over the bunch and never look back. Take Missy Cheyney along for the ride. Oh wait, you’ve already been there for years, right?

    • MLE

      I like how having a highly trained OB at every birth is in the “bad” category. Damn it, where is the bumbling idiot I ordered?!?

      • Amazed

        As I said, a morbidly fascinating place… Did you notice who her first commentor is? As thick as thieves, and not bothered by silly things like conscience at all.

        • MLE

          Yes, old Simpering Simkins. They have proclaimed the data good and are moving on without a backwards glance.

    • manabanana

      I tried to comment. What are the chances my comment will get past “moderation”? I wasn’t stroking anyone’s ego or stating “Yay! MANA! Midwives Rock!” But I was polite. And trying to point out that the conclusion of the study (and the press release) is not actually supported by the data.

      • Amazed

        I’ll never get this moderation thing. Why do we need moderation at all? We don’t moderate things in our offline lives. Being vulgar and offensive is a reason to be “moderated”. But too many people abuse moderation. Disagreeing is the new “being mean” thing.

        Just a few hours ago, I received an email from my editor (and friend, by the way). She wanted to discuss parts of the works I sent her. In other words, she disagreed. How can I moderate this meanie?

        Chances are, your comment won’t show up at all.

        • manabanana

          They seem to be taking a page out of the Putin play-book.

  • The Computer Ate My Nym

    Comparing the two papers, relatively fewer patients in the paper reporting mortality were from the Pacific region. Do you suppose they really did exclude Portland?

  • The Computer Ate My Nym

    Reading through the paper again, I was struck by this statement, “Of the 22 fetuses who died after the onset of labor but prior to birth, 2
    were attributed to intrauterine infections, 2 were attributed to
    placental abruption, 3 were attributed to cord accidents, 2 were
    attributed to complications from maternal GDM, one was attributed to
    meconium aspiration, one was attributed secondary to shoulder dystocia,
    one was attributed to preeclampsia-related complications, and one was
    attributed to autopsy-confirmed liver rupture and hypoxia.”

    Were ANY of these complications necessarily fatal in a hospital delivery? Intrauterine infections can certainly be treated (not with garlic), placental abruption and cord accidents should be recoverable with close monitoring and stat c-section, depending on what exact complication of GDM we’re talking about…well, it probably should never have come to that and probably would have been treatable, meconium aspiration usually just means an ICU stay, shoulder dystocia…enough said, I’m not even sure how preeclampsia kills the baby, and hypoxia bad enough to cause liver rupture would likely to have a stat c-section before it came to that in the hospital. Am I right on this, OBs?

    • Amy Tuteur, MD

      You’re right. The lliver rupture was probably due to overly vigorous attemps to deliver a breech with a trapped head.

      • Ash

        Wow, I never even thought of that. Terrible. Have you heard of intrapartum liver rupture in a hospital birth?

      • The Computer Ate My Nym

        That’s actually less disturbing than my first thought, which was that the liver rupture was due to Rh incompatibility and hydrops. But that wouldn’t fit with the hypoxia.

      • anne

        I can’t like this comment because it’s so horrifying. That poor baby. Is this a “peaceful” birth?

        • SimpkinBot

          clearly, this was caused by an incredible lack of trust of the birthing process

      • KarenJJ

        Poor little mite. That sounds incredibly painful.

      • MLE

        All of those scenarios are awful but that sounds like torture.

      • Ash

        in case anyone ever reads this old article’s comments–I found the liver rupture case. you can find the link to the case on http://oregonmidwifeinfo.com/ . One of the babies reported as a death had liver rupture. Given how unusual this is, it’s reasonable to believe that these cases are one and the same.

    • Ob in OZ

      You are right. These are indications for intervention, not justification for watching a baby die. It is horrible.

  • NoLongerCrunching

    Copying and pasting this comment by hmm hmm from a previous post, because I think it’s apropos to this discussion:

    “I think it’s appalling to note that data capture for the variable “Method of Payment” was 99.96% (recorded in 16,917/16,924 cases), but for Apgars it was 38% (245/646) and neonatal transfer 54% (149/277) of cases. This highlights the real priorities of the midwives “participating” in this study…”

    • MrG

      Deception: That’s the ticket!
      beguilement, deceit, bluff, mystification and subterfuge are acts to propagate beliefs that are not true, or not the whole truth (as in half-truths or omission). Deception can involve dissimulation, propaganda, and sleight of hand, as well as distraction, camouflage, or concealment. There is also self-deception, as in bad faith.

      From: http://en.wikipedia.org/wiki/Deception

    • Mel

      The payment issue hits another ongoing issue for me. Midwives are receiving payment for a service rendered. I support women’s right to choose who delivers their baby. If midwives want to deliver babies for free, I guess I support that too. When goods or services or cash are exchanged in return for services rendered, though, this is a commercial transaction for health/medical services. As such, a much higher burden of safety and oversight is required.

      It’s the same burden of oversight that occurs when I teach/tutor for cash or my husband sells milk. I get really angry that midwives are selling some hogwash crap about how their gift/heritage/non-medical services are immune to the same regulations and sanctions I’d get hit with if I failed to report abuse or my husband would get if he sold milk without a USDA licence.

      • Trixie

        Exactly.

  • Mel

    The only non-creepy explanation that I can tease out of this is that MANA must be multi-national and cover births in Canada and Mexico. That would mean that they have midwives in both countries who are covering 4,000 births. Of course, a well-run professional organization would have simply excluded those midwives from the initial group.

    Another option is that some unknown number of midwives covering roughly 4,000 births in the US got the information in for the initial group, never reported back, and MANA would prefer to gloss over that headache rather than have to admit their data has massive gaps. (That’s professionally sketchy, but less so than refusing to release safety data for half a decade.)

    Of course, this all ties back into the basic problem: the released data is terrifying. Equally terrifying is the assumption that this data represents the best of the best – midwives who care enough about tracking outcomes to report in to a professional organization. If 16% of your data is unaccounted for, even from the cream of the crop, MANA has huge problems.

    • The Computer Ate My Nym

      The problem with that explanation is that in the earlier paper they described the women involved as all living in the US with a detailed description of their geographic location that did not include Canada or Mexico. It’s possible that they messed up on the first description of the location of the patients, i.e. that’s supposed to be the description of the geographic location of the patients in the US only, but the best that can be said of it is that it’s sloppy.

      • Mel

        “Sloppy” seems to keep cropping up with MANA’s studies for a wide variety of reasons. Perhaps we should stop calling them studies since they have such giant holes…..

        • Young CC Prof

          “Loose collections of information and opinion” instead?

          • KarenJJ

            Ideological number fudging?

        • To quote a long – defunct movie review site – “…the plot holes are so vast and numerous that … it’s as silly to refer to them as “plot holes” as it would be to refer to “spiderweb holes.” The negative space of the holes comprises such a huge portion of the thing itself that it overwhelms consideration of the actual material; when you look at a spiderweb, what you see are the holes. The actual spider SILK is an entirely different thing, serving only to give the most flimsy of boundaries to the holes themselves. ”

    • thepragmatist

      I doubt they would WANT to exclude Canada, since our midwives are regulated and have better outcomes. They would want those numbers to bolster their terrible numbers, no? So it’s probably not that.

      • auntbea

        But you might also ruin the transfer and c-section rate. Which is the really important part.

        • Amy Tuteur, MD

          No, silly, the most important part is the exclusive breastfeeding rate! Sure, research has shown that homebirth dramatically increases the risk of neonatal brain damage, but that’s okay as long as you breastfeed to protect the brain function that remains.

        • thepragmatist

          Ha! Fair enough!

    • manabanana

      “The only non-creepy explanation that I can tease out of this is that
      MANA must be multi-national and cover births in Canada and Mexico.”

      Lots of CPMs go to overseas sites to practice, I would guess that they contribute to MANAstats as well. Since the women often served in these foreign countries are poor and have significant health issues – and no access/limited access to modern medical services, MANA decided to leave this data out.

      It wouldn’t just be Canadian births that would be culled (are CPMs even able to attend births in Canada?)- these would be the CPM-attended births from Indonesia, Afghanistan, Pakistan, Uganda, Jamaica, Haiti, Guatemala, Philippines, Senegal, Sierra Leone, Kiribati.

  • Guest

    Ah. You didn’t have any plans for the next five years, did you Dr. Amy?

    • KarenJJ

      Lol. I wonder if they published the stats and said “well that should shut Dr Amy up”?

      • Amy Tuteur, MD

        I doubt it. I suspect that they gambled that no one would really read the paper and would just accept their conclusions. They’ve been right so far.

        • KarenJJ

          Depressing.

  • The Computer Ate My Nym

    One difference between the two descriptions is that the first states that the women included were planning birth at home or in a birthing center, the second says planning birth at home only. Maybe they took out the birth center data? Possibly because it’s even worse?

    • Young CC Prof

      Oh, that would probably explain it. Birthing centers.

      Now birthing centers are kind of a mixed bag. Some provide real prenatal care and have specific criteria for risk-out and transfer. The mothers may be more likely to fall under “a little crunchy” and less likely to be committed to NCB at all costs. But some birthing centers are impressively nuts, like that one that was bragging about their twin births and 11-pound babies. Not sure what the aggregate data would show.

    • Mel

      I think you’re on to something there. What I don’t understand – from a research point of view – is why they didn’t specifically state that they excluded birth centers. It would be pretty easy to add a sentence or two about confounding variables or difficulties in defining a birth center as a reason to drop them.

      • Karen in SC

        Sloppy or deceitful, either way, not good.

    • Amy Tuteur, MD

      Good point. Maybe that’s the difference.

      • Amy Tuteur, MD

        I just amended the post to include that possibility.

        • The Computer Ate My Nym

          If this is the explanation, I’d very much like to see the birth center data. It may not be revealing, being only 4000 or so cases, but given some of the stories about birth centers, I’m concerned that they may actually be worse than home births. If so, that would be a major problem for MANA since I strongly suspect that birth centers are much more profitable than home births.

          • Karen in SC

            As Sara Snyder has said, a birth center might really offer nothing more than another person’s living room.

          • Danielle

            Do you think that’s likely given that the CDC paper suggests that in terms of safety hospital>birth center>home birth? I’m really curious, because I’m wondering if it is good to gently push natural birth moms considering home birth toward the idea of a birth center. Is there good indication that this is counterproductive?

          • The Computer Ate My Nym

            I don’t really know, having not seen the data. My concern is that a birth center might give a false sense of security so that women who might say, “Uh-oh, this is going wrong…time for a hospital” at home might think that everything is fine if they’re in a birth center and not worry about it until it was too late. But I could be wrong. And it’s likely that the numbers would be too small to be definitive either way.

          • Therese

            I can’t possibly imagine how birth center births could be worse. What would make them more dangerous than your own home? In some states there are more restrictions on the kinds of births that can take place in birth centers, like not allowing breeches, VBACs, twins, so people who want to have those kinds of births have to do it at home.

          • Trixie

            It would depend on what kind of birth centers they were. Assuming they were non-accredited, CPM birth centers, then yeah, those stats might be pretty horrifying just based on the anecdotes we’ve read about here.

          • The Computer Ate My Nym

            A birth center might be worse because it could give a false sense of security when it’s really just, as Karen said, someone else’s living room, not a medical facility. Also, patients might feel more pressured to not call for help if they’re in a birth center.

            I should point out, though, that this is all still speculation on my part. There’s no direct evidence that the missing 4000 are birth center births or that, if so the outcomes are worse.

          • I have a feeling that birth center midwives are lazier. They don’t have to drive out to a woman’s home for labor, the laboring woman comes to them. A midwife at a birth center can kick you out or refuse to admit you. A midwife at a birth center usually has many other midwives working specific shifts instead of one or two back ups. It is an optimal condition for people who don’t want to work long hours, something that is usually part of the job requirement for out of hospital midwives.

    • MrG

      If they took them out for that or any other erason they they must mention why. Not mentioning it is, well, unprofessional and shows bad research.

  • ArmyChick

    Looks like they are hiding something….. Hmmm what could it be?