For many women, the phrase “I thought I was going to die” is simply an overstatement of the pain and fear that often accompany childbirth. For some of us, the phrase represents a stark reality – one that comes as an unexpected surprise in the face of all of the competing advice a pregnant woman usually hears. But, it’s true. Even now, in the US – a country that spends more money than any other on healthcare, and that spends more of that money on pregnancy and childbirth than any other area of medical care – women are dying.
The most recent statistics state that 2 to 3 women die every day in the US from causes related to childbirth. This amounts to a total of around 1000 women every year. In addition, 32,000 women suffer near misses, as defined by the WHO, every year. But numbers hardly do justice to the very real impact of the experiences that they reflect. Numbers can’t adequately describe the terror of sudden seizures or the dread and pain that accompanies multiple organ failure.
The current conversation about childbirth in this country does not include the voices of the women who can no longer speak for themselves. The near-miss survivors struggle to be heard above the din of the declarations of those who would sell the idea that childbirth can be controlled. Amidst the cries against “too many c-sections” and “informed consent and refusal”, it can be hard to find an honest discussion of the very real dangers that interventions are designed to prevent. Doctors and hospitals themselves contribute to the problem as they attempt to sell the idea that they can control the experience as well, from the removal of pain to the timing of the delivery.
The narrative is that death in childbirth is something that happened in the past or that happens, but not here in our advanced culture. Near-death experiences are marginalized as overreactions. They are discounted – set aside as anomalies. We are outliers. But the numbers show that there are many of us. Less-than-ideal births account for a significant number of the overall births in this country. One in eight children is born before term – a full 12% of all infants born in this country. Between 5-8% of pregnancies result in a diagnosis of preeclampsia – a life-threatening condition that involves high blood pressure and kidney and liver problems. Placental issues, such as abruption and placenta previa, happen with some regularity as well.
We are everywhere. When I suffered eclampsia and HELLP syndrome in 2006, I was alone in my confusion and pain. I couldn’t explain why or how a disease I knew almost nothing about could happen out of the blue. Why did I not know that my symptoms meant that I was dying – as I would have without medical intervention – as I nearly did even with medical intervention? I looked at the books on my bedside table for the answers – but came up empty. The books were so intent on allaying the fears of the pregnant woman that they utterly failed to alert me to the very real danger that I and my unborn son were in. I didn’t recognize my symptoms because the books were trying to tell me that everything I was feeling could be explained away innocuously. Headache? That’s normal! Swelling? Typical 7th month symptom! Flu-like symptoms? It’s probably the flu – get some more rest!
Once I recovered physically and my son was out of the woods and home from the NICU, I set out on a journey to figure out what happened. I couldn’t handle the pressure of being the cautionary tale that everyone trots out at the baby shower or when they first hear that a friend or coworker is pregnant. It was too much to carry by myself. I volunteered for non-profits that focus on prematurity and preeclampsia. I told my story over and over to anyone who would listen – to anyone who wanted to hear. In that process, I found Anne Garrett Addison – a woman who experienced preeclampsia and HELLP syndrome almost exactly 10 years before I did. Her experience lead her to found the Preeclampsia Foundation, one of the charities for which I volunteered.
Together, we recently embarked on a new project – The Unexpected Project – to allow us to explore our experiences and those of the many women like us, and the women who we have lost. We are planning to make a full-length documentary that examines the alarming rate of maternal deaths in the US. The numbers reveal the failure of our healthcare system, but the individual stories reveal the tragedy behind the statistics. These are real women with real families. These are pregnancies that were supposed to go well, ending with a happy mom and a beautiful infant. No mother anticipates crashing on the operating table, seizing on the kitchen floor, or waking up in the ICU on a respirator. These outcomes may be uncommon, but they were also unexpected.
Please support our work by visiting our website (http://www.unexpectedproject.com/), following us on Facebook and Twitter, and donating to our fundraising campaign – which we will be launching shortly. Share your stories. Show us that your experience matters and that you want to know why it happened. Help us create a voice for all women who ended up with something they were not expecting.
Jennifer Carney has a B.A. in English from Northwestern University and an M.A. in English from Penn State University. She has over 10 years of experience as an editor and writer in educational and legal publishing. Ms. Carney experienced eclampsia and HELLP syndrome prior to the birth of her second child in 2006 and is an active volunteer on the Preeclampsia Foundation’s communication team. Her blog Restless, Agitated, and Combative recounts her experience with eclampsia.
Anne Addison has a B.A. in Fine Arts from Saint Olaf College, an M.A. in Education from City University, and is a graduate of Seattle’s acclaimed The Film School‘s Screenwriting Bootcamp with Stewart Stern (Rebel Without A Cause, Teresa, Rachel, Rachel), Tom Skerritt (Robert Altman’s MASH, Alien, Top Gun, A River Runs Through It), John Jacobsen (host and director of the national PBS show,The Artist Toolbox), and her mentor and friend Warren Etheredge (Host of The High Bar).
Anne is the founder of four nonprofits, including the Preeclampsia Foundation, and the Microsoft Alumni Foundation, and has over 15 years of experience as a nonprofit consultant, maternal health advocate, teacher, and writer. She is Vice President of the Unexpected Project, LCC.