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A Mother’s Day Manifesto: Blood, Toil, Tears, and Sweat

I’ve been writing about safe and effective maternity care for years and direct a coordinated national effort to transform maternity care, but this is a post where the political gets personal.

Last weekend, I attended the birthday party for the sweetest one year old. There were all of the typical rituals – hands and face covered in cake frosting, a pile of toys and new clothes, and a tuckered out babe falling asleep as the party wound down. But this birthday was bittersweet, because it also marks the anniversary of a crisis that very nearly cost the life of this child’s mother, my friend.

Nine days after giving birth, rather than gazing with equal parts sheer love and sheer exhaustion at her baby, my friend – we’ll call her  Near Miss Mom – was unconscious in an ICU on a ventilator, recovering from the emergency hysterectomy and blood transfusion that had saved her life.

I’d say Near Miss Mom had become a “statistic” but we keep no statistics on near miss maternal events, even though multiple agencies and organizations have sounded alarm bells about the rising rate of maternal mortality and have cautioned that for every maternal death, there are many more near misses. Legislation just introduced in the House by Representative Conyers would, among other provisions, establish steps toward a standard definition and routine counting and reporting of maternal near misses.

Because if we’re not counting near misses, we’re not systematically learning what our health care system could be doing to avert them, and for that matter the deaths that do occur. A  just-released report from a state-wide, multi-year investigation of maternal deaths in California found that 38% were likely to be preventable. Let’s take Near Miss Mom’s case, which almost certainly could have been averted far before she was so close to death.

Near Miss Mom almost died:

  • Because her postpartum discharge teaching didn’t include anything about how to recognize and get help for postpartum hemorrhage – even though she had three major risk factors for hemorrhage
  • Because the hospital had no protocol to systematically deal with late postpartum hemorrhage – even though the largest maternal quality collaborative in the country has a freely available toolkit for that
  • Because no one was measuring her blood loss while she sat in the ER on two different occasions for hours at a time – even though she was sitting in a pool of blood so deep it was pouring over the tops of her thighs and the sheets had to be changed more than once
  • Because she had to “wait in line” for the MRI and then wait some more for someone to interpret it – even though there are less sophisticated but equally effective methods to rule in or out the rare defect they were concerned about.
  • Because no one in the ER communicated the severity of her condition to the obstetrician who was “overseeing” her care – even though the OB was in house and could have visited her herself. When she finally reached Near Miss Mom’s bedside, it didn’t take her long to call a Code Red and assemble the team for the emergency hysterectomy.

Patient safety advocates and experts will see some familiar themes in this list – lack of standards and accountability, poor communication, system failures – and although  maternity care is the most common reason for hospitalization, how often do we think of hospital safety as it pertains to maternal health? My best guess is that the disconnect arises from the fact that childbearing women are usually healthy and therefore (physically at least) resilient. Unlike patients who enter the hospital sick or injured, it can take many errors and system failures to actually kill a mother. Yet this means the problems can get so immense and intractable before we see the accumulation of harm. That adds up to a lot of women coping with preventable injury, illness, and emotional trauma at the same time that they should be experiencing the joys and taking on the challenges of new motherhood.

I recently asked Near Miss Mom recently what it felt like to be bleeding to death. Her response wasn’t what I expected, but knowing what I know of the fractured and fragmented system, it’s not surprising.

“Honestly, I don’t know. I was so overwhelmed with the lack of care in the ER and by my OB practice that I wasn’t really thinking about bleeding to death. But why would I? No one thinks about that as a possibility. I mean, I assume no one does. Why would we when we have an expectation of proper care? It wasn’t until I was admitted and in my room, and the OB was asking why the blood was taking so long that I realized I was potentially screwed. My first thoughts were my daughter and husband and would I be there for them. Right after that I went into shock so not much time to truly think about actually dying. I mean, dying? Really? I knew I was bleeding all day but I never thought they would let me reach the point of near death.”

Since the moment Near Miss Mom began her recovery, her most fervent hope has been to help make sure this doesn’t happen to any one else ever again. Unfortunately, when we met with her OB team after the fact, they declined her offer to be involved in quality improvement efforts because those matters are confidential. They also told her that she would need to meet separately with the ER team because they run their own quality improvement programs and the OB Department can’t influence what the ER does (if that’s not silo thinking, I don’t know what is). Then they asked if either of the companions she brought with her for support and advocacy were lawyers and, just for good measure, billed her insurance company for the time spent meeting.

Near Miss Mom has been trying for a year to use her story to spark desperately needed improvements in maternity care, but has encountered road blocks at every turn. Even writing down her story has been too much at times, as she deals with still incomplete medical records, post traumatic distress triggers, and the time and energy constraints all new mothers face.

But she is ready to make change and as her first public acts of activism, Near Miss Mom will join a delegation to get lawmakers to sponsor the Maternal Health Accountability Act and she will use her story to ask others to donate blood in the month of May to honor Mother’s Day. Near Miss Mom writes,

“Without the people who donated blood, I would not be here. It wasn’t only the surgery that saved my life. It was the blood. Eleven strangers saved my life. And saved my baby’s mother.”

I will be at Near Miss Mom’s side for both of these courageous acts of activism. We hope others will do the same in their own communities. Will you join us?

Amy Romano, MSN, CNM, is the Project Director of the Transforming Maternity Care Partnership coordinated by Childbirth Connection.

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Melissa
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Melissa

when i suffered a late PPH on june 14 2011, 8 days after delivering twins, i made the decision to go to labor and delivery rather than to the ER, mainly because i have heard of moms bleeding to death waiting to be seen in the ER. since i think of blood loss as an emergency, it upsets me that ERs all over the country allow patients to sit in their own pools of blood. my decision to initially avoid the ER was a good one, since we ran directly into my OB while he was doing rounds (he had… Read more »

Craig "Quack" Vickstrom, M.D.
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Craig "Quack" Vickstrom, M.D.

@Dr. Tuteur, There you go again, injecting intellectual rigor into emotional debate, a debate which is based on a grab-bag of assumptions and dubious evidence. To all the doc-haters on this board: there is a systemic problem here. As an occasional ER physician, I am required to assess every patient that presents to the ER no matter the complaint. Back in the day, the ER was for…emergencies. This poor woman did not get the attention she deserved. This is probably due to all the sore throats, acne and headaches clogging up the system. Hemorrhage = emergency. At the end of… Read more »

mysticalbeast
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mysticalbeast

@Dr Vickstrom:

but you can also see the systemic failure in the postpartum treatment. In my country every woman in childbed (eg six weeks after giving birth) has access to ten visits of a midwife who looks after involution, lochia, helps with breastfeeding problems etc.
In NMM´s case the midwife would have directed her to the gyn station after the first unnormal bleeding occurred – here she wouldn´t have to go through ER hoping the staff would recognizing the bleeding as sth critical and not “normal cleaning”

San Diego Chiro
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What a heart-wrenching post this is! People should open their eyes and do something about these “near miss” fatalities. Thanks for sharing, great blog!

Amy Tuteur, MD
Guest

What a coincidence, Ms. Nottingam. You, too, are an midwife activist who has agitated extensively for greater government funding and support for midwives in your own country. In fact, you’ve complained that the use of technology in birth will have “lasting implications for civilization.” I wish that activist midwives would get their complaints straight. First they complain that obstetricians have created a “crisis” by the overuse of technology. Now they complain that obstetricians have created a “crisis” by the underuse of technology. Which is it? Or does it not really matter, when the goal is to use any means at… Read more »

Janie Nottingham
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Janie Nottingham

Well, there clearly is nothing more you can say is there Dr Amy. This woman received sub standard and unsafe care, in any country to not assess and monitor blood loss seems an absurdidty. To fail to initiate measures to staunch blood loss also is just insane. Who does that? To dirty the atrocity that is this womans story with all the argument and tit for tat that has gone on between you both is unfortunately neither helpful or appropriate. It reflects the chasm that exists and the inability for solutions to be sought, found and implemented. Dr Amy the… Read more »

Amy Romano
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“A hysterectomy is done for late postpartum hemorrhage when efforts to stop the bleeding have failed.”

And therein lies your assumption. There were no efforts to stop the bleeding. None. No oxytocin, no methergine, no bimanual compression, no surgical techniques. On top of that when she asked for a breastpump just to relieve the engorgement they told her it would be “impossible” (her friend got her a hand pump at Walgreens), so she wasn’t getting any marginal benefit of breast stimulation either. She sat there with an IV in her arm getting plain old fluids.

Amy Tuteur, MD
Guest

“With respect to the specific system issues that could be improved that might have changed the outcome” Let’s put my recommended remedy and Ms. Romano’s to the ultimate test. Let’s see if they would have resolved the issue. My recommended remedy (to address an individual failure, not a systemic failure): The ER doc would have told the obstetrician that there was a postpartum patient bleeding out in the emergency room. Result: The obstetrician would have come to see the patient immediately, diagnosed the problem immediately, and begun treating it immediately. It is not clear that it would have changed the… Read more »

Amy Romano
Guest

I don’t really know where to start, but here we go: With respect to Childbirth Connection as a lobbying organization for midwives and natural birth, it should be noted that the Blueprint for Action (http://transform.childbirthconnection.org/blueprint/) that guides all of our current work is a consensus document prepared collaboratively by a group of stakeholders among whom doctors significantly outnumber midwives. Childbearing women, nurses, insurance companies, hospital administrators, employers, quality collaboratives, and others were all at the table as well, as were all of the major professional organizations involved in maternity care including ACOG. Childbirth Connection does take part in legislative work,… Read more »

MomTFH
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Dr. Amy, just because you assert something, it does not make it true. Amy Romano and I both give specific examples of how the maternity health care system could have improved her care. From the original post: “Because her postpartum discharge teaching didn’t include anything about how to recognize and get help for postpartum hemorrhage – even though she had three major risk factors for hemorrhage” From my comment: “..the OB should have known how to assist the ER in properly evaluating her, even if she was giving orders over the phone.” Also from the original post: “Unfortunately, when we… Read more »

Amy Tuteur, MD
Guest

If this is a failure of the “maternity care system,” surely its detractors should be able to specify just which aspect of the system failed and what must be done to remedy that failure. Curiously, I find no mention of either in the original piece or the comments attempting to defend the original piece. What was the failure of the “maternity care system”? It wasn’t the lack of appropriate training on the part of the OB; she recognized the problem immediately. It wasn’t the lack of resources on the part of the hospital; once the obstetrician arrived, the patient received… Read more »

Guesty McGuesterson
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Guesty McGuesterson

“…Modern medicine’s conquering of infectious disease set up a quasi-religious belief in its ability to reduce suffering and disease that now seems stalled by … medical, economic, organizational and social problems. [Critics try] to portray the biomedical orthodoxy as responsible for the problems confronting organized medicine … and suggest that orthodoxy is ill suited to solve the developing challenges to care…” Okay Dr, Amy, so many ellipsis so little time. And to cut cut and paste a portion from this paragraph that supports MY world view (just like you did): “[Critics try] to portray the biomedical orthodoxy as responsible for… Read more »

MomTFH
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Dr. Tuteur, the patient states: “During my first ER visit, the head ER doc said “If it were up to me, I’d release you. You’re just cleaning out. But I have to defer to your OB because you’re under their care.”’ The specialist was clearly consulted. Maternal mortality and near misses in the United States, like most developed countries, involve rare events, thank goodness. However, these are the events we need to learn from. What is wrong with creating a system of looking at near misses and maternal mortality? Also, I have looked over the checklists and protocols at the… Read more »