U.S. mothers are dying. Why don't we know that?

How interesting that I would find your blog on Mother's Day. Amy Tutuer is right about Group A strep infection and the very real possibility that Claudia Mejia's was not a hospital-acquired infection.

I do have some comments about the rest of her post. She wrote: "There was a large increase in deaths from indirect maternal causes
(pre-existing disease aggravated by pregnancy) and deaths from maternal
causes more than 42 days after delivery or pregnancy termination. These
increases could be real, or they could merely reflect the fact that
death certificates now have additional questions on them that are
designed specifically to identify late maternal deaths."

Maybe Dr. Tutuer didn't mean it to read this way (I suspect she didn't), but late maternal deaths are just as important to track as deaths within the 42 days after the end of pregnancy. That's Point 1. Point 2 is that she failed to mention that only some states' death certificates have additional questions on them that are designed specifically to identify late maternal deaths. This is important: most states still do not have such questions.

Can we agree that it would be good for every state's death certificate to have the additional question asked in the way that the US Standard Certificate of Death now calls for? (The question was not even on the 1979 and 1989 Standard Certificate of Death because of the perception of some that there wasn't enough space! How about a larger piece of paper?) I found it shocking years ago when I first found out that our states don't even collect the same information. I'm not aware of any other country that allows this degree of chaos in its system. The CDC stated in 2007: "In 2003, only four states could capture information consistent with the standard." These states are Idaho, Maryland, Montana, and New York (including NYC). Surely, Dr. Tutuer and I should be able to agree to work together (not against each other) to apply the pressure to the rest of the states so that every one follows the US Standard. That would be a good starting place, but we need a lot more than this to fix what's wrong in our maternity care mess. And, contrary to what she claims, I do not blame this all on obstetrics. However, I do believe that ACOG could do more to help fix our problems, and I'm sure that she would have more influence with that organization than I.

Let's not miss the point that our own Dept. of Health and Human Services states that the maternal death rate should not exceed 3.3 deaths per 100,000 births. Even if we're doing a little better at ascertainment than we were a few years ago, our death rate is still way higher than it should be. It's extremely high for women of color.

"There were 473 direct maternal deaths in 2003, and 492 direct maternal
deaths in 2004, an increase of only 19 deaths. The rate for direct
maternal deaths rose from 9.3/100,000 to 9.6/100,000, a change that is
not statistical significant."

Dr. Tuteur dismisses this increase of "only 19 deaths" as "not statistical (sic) significant." i'm pretty sure that those 19 families are really missing their mothers today and every day. I can tell you that the ob.gyns with whom I speak in the UK are not so dismissive when they discuss maternal deaths. I think we have to care about every unnecessary death and seek to reduce these in the future. 3.3/100,000 is an attainable goal, even taking into account the inherent risks of pregnancy and chlidbirth.

"The rate of underreporting of maternal deaths is no different than in
many other first world countries, and we are taking steps to improve
surveillance and reporting methods. Far from trying to hide maternal
deaths, we are actively seeking out as much information as possible. "

Dr. Tutuer is correct in saying that some other wealthy countries have large rates of underreporting (France is one) and that some steps are being taken to improve reporting. I'm not sure from her comments that she read my article in Mothering, but it's available on the web. I'd like to discuss it with her. At any rate, she can't claim that the four countries of the UK are among the countries with substantial underreporting problems, and that is the standard that I think our country should follow. That is why I began the Safe Motherhood Quilt Project nearly a decade ago.

Additionally, she is factually incorrect when she claims that we are actively seeking out as much information as possible. If we were doing that, we would make sure that death certificates were uniform in the 50 states, Puerto Rico, Virgin Islands and Guam; we would make sure that physicians had proper training and incentives to fill out the cause-of-death section accurately (the CDC wrote in 2001: "Physicians receive minimal training in how to correctly complete death certificates." and "According to the NCHS (which uses ICD terms and definitions for maternal mortality), the completeness and quality of maternal death reporting could be improved if physicians completed the cause-of-death section of the death certificate more accurately."); grieving families wouldn't be talked out of having autopsies by a risk manager labeled as a grief counselor following a maternal death; autopsy rates would go up sharply, especially in larger hospitals and insurance companies would be required to pay for them (several countries make autopsies mandatory for possible maternal deaths); we would dispense with the honor system of maternal death reporting; audits would become possible; and there would be mandatory extra-hospital mortality and morbidity review committees functioning according to the best guidelines in every state. At present, fewer than half of the states have such systems of review. In my opinion, the ACOG should call for every one of these reforms. If it did, we would see these changes within a very few years, and then we might have a chance to see the maternal death rate go down for a change.

"The purported increase in maternal mortality is the result of improved reporting, not an increase in maternal deaths."

This is factually wrong. Neither Dr. Tutuer nor the CDC (by their own admission) has the facts to make this statement.

"These stories are receiving copious media attention (you wouldn't know about them if they were not)."

I guess that "copious media attention" means one article in Mothering magazine. There'll be another published in the Journal of Perinatal Education next month. If the project makes the NY Times or Washington Post or the wire services, I'll agree that the attention is copious.

"The baseline maternal mortality rate would predict approximately 40,000
maternal deaths per year in the US. Instead we have only 400-500. "

If Dr. Tutuer paid closer attention to the facts as stated by the CDC (which does not claim to have a 97% rate of ascertainment that is based upon additional surveillance techniques, as does the UK's Confidential Enquiries), she would not confidently claim that we have only 400-500 deaths per year in the US. Why the obfuscation?

"Ms. Gaskin represents herself as shocked at the current rate of
maternal mortality. Perhaps that because she is unaware of the inherent
dangers of childbirth. The Safe Motherhood Quilt is a publicity stunt.
As far as I can tell, Ms. Gaskin herself, and direct entry midwives in
general have done NOTHING (no research, no education, no fund raising
and no outreach to victims' families) to reduce the incidence of
maternal mortality. Apparently, maternal mortality is not the real
issue; criticizing obstetrics (inappropriately and unfairly) is the
real issue."

i will admit to having been so naive as to have thought for many years that our maternal death rate was among the lowest in the world. The World Health Organization stated in 2007 that 40 countries have lower maternal death rates than we do, and many of these countries have far better rates of ascertainment. Contrary to what Dr. Tutuer claims, I did not start my "publicity stunt" to inappropriately criticize obstetrics. I believe that mothers, their families, obstetricians, family physicians and midwives are all ill-served because we in the US haven't yet created an infrastructure adequate to the task of accurately ascertaining every maternal death possible that occurs each year in this country. I have been in many other countries, many of which aren't as wealthy as our own, that do a far better job of gathering this necessary data. Slovenia is just one of these. So, yes, I have been learning shocking things about maternal deaths in the US. I did not expect to find women dying for lack of sufficient postpartum attention after hospital discharge (or even in hospital following birth or amniocentesis, amnioinfusion, or vaginal birth). Google these names, you, too, might come to understand that we could be doing better for our mothers: Galit Schiller, Tameka McFarquhar, Virginia Njoroge, Elizabeth Davis (+ Danville, Virginia), Heather Egan-Haynes, Melissa Farah, Valerie Scythes, Tina Long (+ Tripler Army Base), Caroline Wiren, Carrie Krone, Julie LeMoult, Jasmine Gant, Elisha Crews Bryant, Mara McGlade, Jennifer Adams, Inamarie Stith-Rouse, Sabine Elias, Lynne Saiter, Genesis Metcalfe, Gwyneth Vives, Tatia Oden French, Julie Crowley + Mountain Home, Arkansas.

As for the NOTHING that Dr. Tutuer claims that I have done regarding maternal mortality, I have actually carried a lot of research (has she ever sat down and read the full report of Why Mothers Die/Saving Mothers' Lives for any given triennium?) and outreach to families of mothers who have died. I have trouble understanding how she can claim that what we have in place reaches the standard set by this excellent system. See www.cemach.org.uk ( http://www.cemach.org.uk ) and you can download the huge pdf copy for free and see what I mean.

I'm even trying fundraising because the expenses for the project are increasing beyond my ability to keep up with them, and there is a DONATE button on my website (backed by a 501 c 3 organization called Rocinante). When my website is more developed (my son is currently working on it, so there should be 160 women's names and quilt blocks represented there very soon), I will be able to display some of the comments that have come to me from families of women who died from pregnancy-related causes. By the way, some of my informants and contributors of quilt blocks are ob.gyns, nurse-midwives and family members.

I know that many women need to take better care of themselves as well
and that this, too, is a factor in our comparatively high death rate. But if ACOG's British counterpart can
participate in the reflective practice of publishing Saving Women's Lives and making it easily available to the public, why shouldn't we follow their example? What would be wrong with that? Sorry, I couldn't figure out how to get rid of the underline.

I have shown the quilt at several medical centers in this country and have been urged by obstetricians and epidemiologists to continue this work. It's Mother's Day, Dr. Tutuer. Please realize that it's easier for me to collect the names of women who wanted natural births in birth centers or at home who died than it is for me to obtain names of women who died in hospital. Once we get a good system in place, I'll be happy to give up my "stunt" and make a happier quilt—perhaps the one you have suggested. But every time I show the quilt, I hear of another 4-5 names, most of which took place during the last year or two, and the number of deaths that follow induction at 40 weeks or so and c-section for singletons, twins or triplets is higher than most women (or physicians, I suspect) imagine. And the refusal of the insurance companies, so far, to pay for the postpartum home visits that our women should be getting after hospital discharge is something that we should all be able to agree should end.

Ina May Gaskin, MA, CPM

Curator, The Safe Motherhood Quilt Project

www.inamay.com ( http://www.inamay.com )

www.rememberthemothers.net 

Thank you for bringing our attention to this and for being willing to take a leap and report information. Ms. Doctor, well-intentioned as she is, seems to feel the need to defend our medical system without looking more broadly into the issues surrounding the pathologizing of birth in this country.

Yes, of course modern medicine saves thousands of lives each year. Noone denies that. But how many women and babies does it damage or even kill along the way?

I urge you to check out The Business of Being Born, an entertaining and informative movie produced by Ricky Lake about birth practices in the US today.

It's ironic that you did not explain where Gaskin got her latest maternal mortality figures.

She got them from the preliminary version of the latest yearly publication of detailed US death statistics: Deaths: Final Data for 2005, National Vital Statistics Reports, Volume 56, Number 10, January 2008, which is available for free on the website of the National Center for Health Statistics. The report was made available even before it was finalized because the US has a policy of open and transparent availability of health care statistics.

Amy TuteurMD

Why is it that people are so afraid of Doctors and Nurses?

Maybe we have the wrong expectations, maybe we put too much trust in them. As a patient you have the right to be informed and to make your own decisions. You also have the right get a second opinion. But why are we so afraid of health care? Is it the media, the politics? Did we really expect that doctors and nurses should be perfect? In reality, each patient has their own story. And while the media may report allegations, investigations, etc they are not privy to all of the details in the case. We need to be more proactive as consumers. Do your own research, and get your facts from reputable sources. Find the doctor you like, who really listens to your needs.

I don't think condecension or defensiveness is the answer. But I also don't think putting health care professionals on a pedestal and then tearing them down is the answer either. This is a relationship. People need to be cared for, and doctors and nurses need patients. Let's work on the relationship, open up communication, and get back to what matters. Good health care.

"Dr." Amy --

You often talk down to the women of this forum. I've seen it many times.

You are using your tile of "dr" as means of making everyone else here feel as though we are inferior, which isn't true. Especially when you're "practice" is charging desperate pregnant women to ask you questions.. ONLINE. If you want to change the world, and the way women view childbirth, perhaps you should open up a real practice, and start putting your education to good use. If you could see and experience what is going on in the real world first hand, you might have a different opinion of what is going on in the medical field when relating to child birth.

Mary

I understand your frustration, Amy. Yet at a time when we trust doctors less and less and are becoming increasingly concerned about our safety every time we walk into the hospital, perhaps what we, as patients, need from you, as a doctor, is not to regale us with this tone of superiority. Perhaps what we are seeking is your care and your knowledge and your help.

If we are misinformed, help us to understand the truth as you see it. Don't talk down to us and treat us as if we are a waste of your time. Don't put on this defensive air and act like you are above reproach. We live in a world where we know that doctors and nurses make huge mistakes every day. I'm sorry that you have to make up for the less savory in your field, but you know what? Every single person that is in a service industry has to make up for the bad apples. What we need from you is not your defense of your profession, but your care, and your willingness to educate us.

It's difficult to raise awareness by writing a piece that is factually inaccurate and filled with innuendo. I suspect that you are simply interested in slandering American obstetrics, and never bothered to find out whether your claims, or Gaskin's claims are true.

Let's go through the piece analyzing each claim:

" Ms. Mejia was told she contracted streptococcus, a flesh eating bacteria, and toxic shock syndrome and if she wanted to live, she would have to have both sets of limbs amputated. "

The implication is that Ms. Mejia contracted this infection in the hospital and that it was related in some way to childbirth. You neglect to mention (and perhaps you do not know) that the vast majority of cases of group A streptococcal infection are acquired in the community. Group A strep infection is very common and usually mild. This is the same bacteria that causes the common sore throat and impetigo. Rarely, the same bacteria can cause more serious complications such as rheumatic fever, toxic shock syndrome or necrotizing fasciitis ("flesh eating" disease). As everyone knows, there are literally millions of cases of community acquired group A strep every year. Of those, 500-1500 lead to necrotizing fasciitis.

So, rather than being a rare and unusual bacteria that Ms. Mejia contracted in the hospital, group A strep is common, found everywhere, was probably brought into the hospital on the patient, and this case represents a serious complication of a generally mild disease.

"it did not seem to get much media attention."

How do you even know about it, except that it got a tremendous amount of media attention? Google has at least 1,480 separate links to the story.

"Unfortunately, this scenario of obscuring maternal complications and mortality appears to be the norm in the United States, rather than the exception."

Clearly you have no idea about the reporting of maternal mortality in the US. The US has a very extensive system of reporting and investigating maternal deaths. Indeed, the supposed "increase" in maternal mortality that you claim is, in large part, the result of recent improvements in reporting maternal mortality. These improvements were designed to pick up cases of maternal deaths that occur more than 6 weeks after delivery.

"The maternal death rate in the United States is the highest it's been in decades "

No, the REPORTED death rate is the highest it has been in decades, which is precisely what was expected after improvements in reporting. That's why you need to look at the data, rather than simply repeat falsehoods asserted by others.

The most recent complete data that we have is from 2004 (Deaths: Final Data for 2004, National Vital Statistics Report, Volume 55, Number 19, August 2007) Let's look at the data for 2004 as compared to the data for 2003. The first thing you notice is that the absolute number of deaths rose from 495 to 540 deaths, an increase of 45 deaths. Yet a closer look reveals that direct obstetric deaths have changed very little. There were 473 direct maternal deaths in 2003, and 492 direct maternal deaths in 2004, an increase of only 19 deaths. The rate for direct maternal deaths rose from 9.3/100,000 to 9.6/100,000, a change that is not statistical significant.

The bulk of the change from 2003 to 2004 occurred in two areas. There was a large increase in deaths from indirect maternal causes (pre-existing disease aggravated by pregnancy) and deaths from maternal causes more than 42 days after delivery or pregnancy termination. These increases could be real, or they could merely reflect the fact that death certificates now have additional questions on them that are designed specifically to identify late maternal deaths.

"Contrast this with the United Kingdom where every three years the British Royal College of Obstetricians and Gynaecologists publishes a book titled "Why Mothers Die." In addition to providing detailed, accurate numbers for each category of maternal death, "Why Mothers Die" also makes recommendations regarding what should be done to reduce the number of deaths over the next three years. The book is available to the public in bookstores, so anyone and everyone can have access to this information."

The United States does exactly the same thing. It publishes maternal mortality statistics each and every year, and they are available for free on the internet and these numbers are broken down exactly the same way they are in the British reports. The US also publishes periodic updates on the way that the data is collected.

"Where does that leave us here in the US? We have a mother who was forced to become a quadriplegic unable to get answers from the hospital as to why. We have an underreported rate of mothers dying from pregnancy and birth complications, often without any kind of outside review. And according to the CDC we have no improvement in the maternal death rate since 1982. Yet none of these stories are getting the kind of media attention they deserve."

Your piece leaves us where "natural" childbirth advocates always leave us, with a mishmash of mistruths, half truths and outright deceptions.

1. You have provided no evidence that the example you used to highlight "increasing" maternal mortality has anything to do with obstetrics or with medical care.

2. The rate of underreporting of maternal deaths is no different than in many other first world countries, and we are taking steps to improve surveillance and reporting methods. Far from trying to hide maternal deaths, we are actively seeking out as much information as possible.

3. These stories are receiving copious media attention (you wouldn't know about them if they were not).

4. The purported increase in maternal mortality is the result of improved reporting, not an increase in maternal deaths.

"To help draw attention to the underreported maternal death rate and lack of media interest, Gaskin started The Safe Motherhood Quilt Project. Whenever she receives documentation that a US woman has died from pregnancy- or birth-related causes from 1982 to the present, she arranges to have a quilt square made to honor her. The quilt, which can be viewed virtually online and is up to 85 squares, "acts as the voice for women who can no longer speak for themselves." It is quite sobering to view, even online."

I've decided to construct a virtual quilt of my own. My quilt will highlight the women whose lives have been saved each and every year because of advances in obstetrics. Modern obstetrics has dropped the maternal mortality rate 99% in the past 100 years. The baseline maternal mortality rate would predict approximately 40,000 maternal deaths per year in the US. Instead we have only 400-500. Therefore, my quilt will have 39,500 blocks. Keep in mind, that represents only the women saved in one year.

Ms. Gaskin represents herself as shocked at the current rate of maternal mortality. Perhaps that because she is unaware of the inherent dangers of childbirth. The Safe Motherhood Quilt is a publicity stunt. As far as I can tell, Ms. Gaskin herself, and direct entry midwives in general have done NOTHING (no research, no education, no fund raising and no outreach to victims' families) to reduce the incidence of maternal mortality. Apparently, maternal mortality is not the real issue; criticizing obstetrics (inappropriately and unfairly) is the real issue.

And that's the real issue of your piece. It is filled with mistruths, misinformation and distortions all designed to denigrate modern obstetrics.

Amy TuteurMD