I have four children. I have read nearly every book that talk about pregnancy, labor, and delivery. I have attended every labor and delivery class held in the Duluth/Superior area, I have gone to every baby and pregnancy fair, I have read countless message boards and online forums. To say that I felt completely qualified to birth my fourth child is an understatement. By that point I felt like I knew a lot about the process of birthing a child. What could go wrong?
As it turns out, you don’t know what you don’t know.
I didn’t know there was something called an Amniotic Fluid Embolism and I didn’t know that it happens in every 2.5 in 100,000 (or 1 in 40,000) births in North America. I didn’t know that some statistics say that 20-60% of women do not survive it. Not that it would have mattered if I knew or not because you can’t prevent, predict, or reverse an amniotic fluid embolism. Once it begins, care is entirely supportive. It’s hard to determine that this is what is happening, it’s mostly a diagnosis of exclusion meaning when nothing else fits the events happening, it’s an amniotic fluid embolism. Interestingly, it’s the leading cause of maternal death globally, and it’s the second leading cause of maternal death in the United States. An AFE occurs in pregnancy, most often before, during, or shortly after delivery.
What Is It?
An amniotic fluid embolism is an allergic-like reaction for mother once amniotic fluid enters the circulatory system. It is normal for amniotic fluid to enter the circulatory system when you have a baby but in some cases, suddenly you are allergic to it. For me, it happened during my fifth pregnancy (fourth birth) so I never would have imagined I’d suddenly be allergic to something my own body produced. AFE happens in two phases: rapid respiratory failure and cardiac arrest, and the hemorrhagic phase.
In my case I was rushed into an emergency cesarean and immediately after Lucy was delivered I experienced lung and heart failure. After my delivery staff and anesthesiologist were able to revive me, I had a stroke and I began hemorrhaging near my uterus, requiring a second surgery to save me. Many women end up having complete hysterectomies in order to stop bleeding; others are able to avoid that but still end up with a variety of health problems following this. I was in the ICU for several days and I was able to go home on day 8.
My recovery has not been easy. I sustained major blood loss and now have cognitive impairment, including short term memory loss. I have an auto-immune disorder, endocrine disorders, depression, anxiety, PTSD, and more. To say I’m not the same person as I was the day I went to the hospital to have my last baby is an understatement. What has struck me the most in my recovery is I had no idea that AFE existed and I didn’t realize that so many women die from this every year. Perfectly healthy, happy women go in to have a baby and they don’t come back out.
What Can You Do?
Trust your gut. If you feel like something is wrong, be vocal about it. I had an inner voice my entire pregnancy telling me something wasn’t right and though I was vocal at every prenatal visit, this wasn’t something they could have seen. I hope one day there will be a way to predict an AFE but that is dependent on moms being upfront with their concerns and symptoms. When you’re pregnant, no symptom or weird feeling should be discredited. It really is all about being your own advocate; nobody else can do it for you.
Got Blood? You always hear about the need for donated blood but until you are in need of it, it doesn’t really strike you as a big deal. Make sure the hospital or birthing center you plan to give birth in has access to a large blood bank in an emergency.
What’s their plan? Have you ever asked your provider what would happen in an adverse medical event during labor or delivery? I haven’t. Sure, I’ve heard if you’re laboring at home or in a place away from a hospital they’ll call for an ambulance and get you there, but what happens if you have something like an AFE that needs medical attention right now? Do they have the resources to stabilize you? I honestly had never thought of that but I did learn that had I not been in the emergency c-section I would have died in my laboring room because those rooms were not equipped to handle multi organ failure and hemorrhaging and they didn’t think they could run me to an OR fast enough. I had no idea but now I encourage moms to ask these questions because it is important.
Educate yourself. We always focus on knowing the signs of labor and how to push your child out but being pregnant means learning about your body, what’s happening, how it is happening, and when to know if something needs to be looked at. ProPublica has been doing a really interesting series on maternal mortality and in one article they said most women who contributed their stories didn’t know anything about the thing that almost killed them during their pregnancy or delivery.
Have the conversation. I know people will say, “Don’t be negative, you’ll be fine” but you might not be and you should convey your wishes to your family beforehand. When I went for my second surgery to stop blood loss my husband was asked if I would want a hysterectomy and he really didn’t know. We were done having kids so that wasn’t a concern but it also has long lasting medical effects and we had never discussed it. I always assumed I’d be able to make that decision on my own. Your spouse and/or family need to know your wishes, how you feel about blood transfusions, organ donation, even your stance on life-saving measures. Even better is to have it in writing so it is crystal clear in those chaotic moments.
Postpartum care is HUGE. Make sure your OB/GYN is prepared to provide top notch postpartum care. So often women don’t go back for their six week check or tell anyone when something doesn’t feel right because the focus is solely on their baby, and the postpartum period doesn’t put you in the clear. You can still have complications even beyond postpartum mental health issues. You can’t take care of your baby if you don’t take care of you.
Thankfully this isn’t a lost cause. The Amniotic Fluid Embolism Foundation is a 501(c)3 dedicated to spearheading the research for a cause and a cure, providing clinical and patient-centered education, and offering support to families and caregivers of those affected by AFE. In December 2018, Congress voted to pass legislation for the Maternal Health Accountability Act and sign it into law. This establishes grant money for states to identify and investigate maternal deaths and use that data to provide data to health providers and establish policies to prevent further maternal deaths. This is a really big deal because, previously, maternal deaths weren’t looked into and without that data we can’t save the next mom. It’s up to all of us to demand action. In 2019 we should not be losing so many mothers to the most miraculous things a human body can do: giving birth.