By AMY ROMANO

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 â€" 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 â€" we’ll call her  Near Miss Mom â€" 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 â€" even though she had three major risk factors for hemorrhage

• Because the hospital had no protocol to systematically deal with late postpartum hemorrhage â€" 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 â€" 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 â€" 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 â€" 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 â€" lack of standards and accountability, poor communication, system failures â€" 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 HYPERLINK “http://transform.childbirthconnection.org” Transforming Maternity Care Partnership, a multi-stakeholder collaborative effort to achieve a high-quality, high-value maternity care system, coordinated by Childbirth Connection.

Filed Under: THCB