This is a story about how I almost died after giving birth two years ago – and what I’m doing about it now to make sure what happened to me doesn’t happen to anyone else.
I had delivered my beautiful, healthy boy on Mother’s Day 2017, and had just come home from the hospital when I realized that something was wrong. Of course, I had expected to feel wrecked after childbirth – who wouldn’t? – but this was different. This wasn’t “normal.” My face was swollen, my heart was racing, my head pounding, and while I thought I could cure this with a nap, I suddenly had the feeling: If I go to sleep, I won’t wake up.
We went to the closest ER, five minutes from our home. I told the staff that I might have pre-eclampsia. I was no expert, but I had just read about a mom who died of the condition because her symptoms were overlooked until it was too late, and from what I could tell I had every classic sign.
Waving away my concerns, the staff gave me blood pressure meds and a bed to rest in. I was told, “You do not have pre-eclampsia.” They wanted to send me home.
Lucky for me I didn’t believe what I had been told. I pushed back. After a sleepless night of panicked worry, taking a picture with my son thinking this may be the only thing he will have of me, eventually I was transferred, reevaluated and diagnosed – it was postpartum pre-eclampsia. I was immediately treated, and a few days later I was back home with my son.
But a switch had been flipped. I had successfully advocated for myself; now I needed to advocate for others. I had to make sure what happened to me – the lack of information provided to me about maternal complications before my discharge from the hospital the first time, the missteps and miscommunication that had put me unnecessarily at risk the second – wouldn’t happen to anyone else.
My first move was to reach out to the Chief Safety Officer for Gynecology and Obstetrics for the two facilities where I received care. I called and emailed and requested in-person meetings to discuss how my case could have been handled better. I studied up and prepared talking points. I downloaded and printed out a handy list of warning signs and symptoms, developed by the Association of Women’s Health, Obstetric and Neonatal Nurses (AWHONN) that nurses in other states had already started sharing and sending home with patients. (A poster version is available from the AWHONN website in four languages.)
I was not an experienced advocate – my day job is as a research scientist in a university lab – and I didn’t know how it would pan out, but I knew I had to try.
And policy change did come. Now, at the hospital where I gave birth, the AWHONN “save your life” flyer is reviewed with new moms before discharge. Additionally, the hospital system's ER staff has been retrained in postpartum pre-eclampsia response, and every woman who comes back to the hospital within six weeks of giving birth must be seen by an OB within the hour.
I share this story because I hope to inspire others to do what they can to enact change in their local communities. I want to do my part to help guide others on how to use their voices and tell their stories to help raise awareness of maternal health – and galvanize support around solutions. The US maternal mortality rate is the highest in the world among high-income countries; about 700 women die every year from pregnancy- and childbirth-related complications, and as many as 60% of these deaths are preventable, according to the CDC.
This is my call to action for all mothers: You know best what can be done to better improve maternal health in your community, because you have experienced it. While national efforts through initiatives such as the Alliance for Innovation on Maternal Health (AIM) and Review to Action are incredibly important in setting standards, you can work with your unique systems to make a difference in the lives of all the mothers who come after you.
More champions, more advocates are needed. We all have a stake in this – not just women, or women who are pregnant, but anyone and everyone with a sister, daughter, friend or neighbor who might one day become pregnant. We can all do our part. We can print, post, tweet and forward the information and tools that are available. We can educate and empower ourselves, our partners and loved ones to know when to get help when help is needed, and while getting that help, to demand better care. Survival is the bare minimum. We want mothers to thrive and feel supported in those critical days, weeks and months post-delivery.
As Mother's Day month ends, I encourage all who feel as passionate as I do about these issues to find ways to productively channel that passion. I shared my story and the local level changes that are saving lives in my community today demonstrate what can go right when we speak up in a way that gets others to listen, and then, more importantly, to act.
Dr. Marie McCausland has a PhD in molecular virology and is a post-doctoral fellow in HIV research at the Alan Levine Laboratory, Case Western Reserve University. Marie's advocacy work is supported by Merck for Mothers, Merck’s $500 million global initiative to help create a world where no woman dies giving life. Merck for Mothers is known as MSD for Mothers outside of the United States and Canada.