The Unexpected Project: Pre-eclampsia Researched, Revealed and Reviewed. Part II of an interview with Jennifer Carney
By: Walker Karraa
Regular contributor Walker Karraa wraps up her interview with Jennifer Carney, who became active with The Preeclampsia Foundation and the Unexpected Project after suffering from eclampsia while pregnant with her second child. Have you had to answer any questions in your classes or with your clients and patients after the recent episode of Downton Abbey, where one of the characters developed eclampsia? What have you shared with your pregnant families? Part one of Walker’s interview with Jennifer Carney can be found here. – Sharon Muza, Community Manager.
Walker: What do you see are the common myths regarding pre-eclampsia?
JC: Common myths? Oh, there are so many. A lot of people seem to think they know what causes preeclampsia and how to cure it. There’s a whole faction of advocates who buy into the work of Dr. Tom Brewer, who in the 1960’s, devised a very high protein diet for mothers based on the idea that preeclampsia is caused by malnutrition. This isn’t supported by the current research, but it gets repeated all the time. Other people argue that preeclampsia is a so-called “lifestyle” disease – caused by obesity and poor prenatal care. Obesity is a risk factor, but it is only one of many and poor prenatal care can cause the disease to go undetected, but it will not cause it to happen in the first place. There are also a lot of people who think that the delivery of the baby will end the risk to the mother – and while it’s true that the removal of the placenta is essential, preeclampsia or eclampsia can still happen up to 6 weeks after delivery. There are other myths, but it strikes me that so many of these myths are rooted in a desire to control pregnancy. If we can blame preeclampsia on one central cause or on the women who develop it themselves, then we can reassure ourselves that we won’t develop it, too. There are risk factors that can increase a woman’s chances of developing the disease, but women without any known risk factors have developed it, too.
It’s not comforting to think that no one is safe, but with knowledge of the signs and symptoms – a woman can react to it promptly and receive the care that she needs. But this will only happen if women get the information and understand that it CAN happen to them. I am blown away by the ways in which preeclampsia and other serious complications are downplayed and dismissed in pregnancy books, online and even by some medical practitioners. Preeclampsia CAN happen to you – but you can deal with it IF you know the signs and the symptoms.
Walker: Can you share with our readers what you are doing with Anne Garrett Addison at The Unexpected Project?
JC: The Unexpected Project is a documentary, website, and book project that will examine the rate of maternal deaths and near-misses in the United States. Anne Garrett Addison, who founded the Preeclampsia Foundation, and I are both classified as near-misses due to preeclampsia. With Unexpected, we want to take a look at all maternal deaths regardless of the cause – preeclampsia, amniotic fluid embolism, hemorrhage, placenta previa, placental abruption, infection, suicide, and any other causes. We also want to look at the women who survived these complications because the line between surviving and dying is in these cases, often quite thin. Every case is different and there is no one factor to blame for the maternal death rate in the US. We will look at interventions and cesarean sections, but we will also look at the lack of information available to women and the tendency of some birth activists to minimize the dangers of serious birth complications.
|Current Preeclampsia/Eclampsia StatisticsMaternal mortality and morbidity are, unfortunately, a part of the pregnancy and childbirth experience for women and their families in the US and the world. While most (99%) of maternal mortalities occur in the developing world, the 1% that occur in developed countries like the US are still of concern to maternity care providers and advocates. Indeed, U.S. still ranks 50th in the world for its maternal mortality rate (1).
More common than a maternal death, are severe short- or long-term morbidities due to obstetric complications (2). Some estimate that unexpected complications occur in up to 15% of women who are otherwise healthy at term (2).
In particular, hypertensive disorders of pregnancy, including elevated blood pressure, preeclampsia, eclampsia and HELLP syndrome are estimated to affect 12-22% of pregnant women and their babies worldwide each year. (3) Adverse neonatal outcomes are higher for infants born to women with pregnancies complicated by hypertension.
In the U.S., upwards of 8 percent or 300,000 pregnant or postpartum women develop preeclampsia or the related condition, HELLP syndrome each year. This number is growing as more women enter pregnancy already hypertensive (cite). Preeclampsia is still a leading cause of pregnancy-related death in the US and one of the most preventable. Annually, approximately 300 women die and another 75,000 women experience “near misses” – severe complications and injury such as organ failure, massive blood loss, permanent disability, and premature birth or death of their babies. Usually, the disease resolves with the birth of the baby and placenta. But, it can occur postpartum–indeed, most maternal deaths occur after delivery.
Recent statistics from Christine Morton, PhD.
The trend toward “normal” or “natural” birth does not seem to allow a lot of space for our stories to be heard or to be told. This has the effect of making survivors feel marginalized – as though their experience is somehow too far outside “normal” to be a part of the overall conversation. The one constant of all of our stories is that none of us expected to become statistics. Our birth plans did not include emergency cesarean sections, seizures, ICUs, blood transfusions, strokes, hysterectomies, CPR, prematurity, PTSD, depression, or death. No one was more surprised than us. This isn’t about assigning blame – this is about finding answers, improving birth for ALL moms to come, and learning to live with the unexpected.
Walker: How did you get involved with researching for the Preeclampsia Foundation?
JC: I started out volunteering with the March of Dimes in the spring following my son’s birth. I started a walk team and raised money, hoping that I would be able to meet other moms who had been through something similar. I felt very alone in the months following his birth. I was dealing with postpartum depression (PPD) and post-traumatic stress disorder (PTSD) symptoms and struggling to feel normal again. I had a premature infant – which meant sleeping through the night was a problem for a long time. When I returned to work, I was greeted by a coworker who declared that she now no longer wanted to have children because of what I had gone through. This weighed heavily on me – and I felt like I was the cautionary tale, the one bad pregnancy story that everyone knows. I know I had never heard a story as bad as mine – so I felt deflated, flattened by the whole thing.
With the March of Dimes, I found moms to help me deal with the preemie part of it. As he matured and grew out of the preemie issues, I found that I still had a lot of issues to deal with regarding my own health – both physically and mentally. I decided to volunteer with the Preeclampsia Foundation after they merged with the HELLP Syndrome Society. The Preeclampsia Foundation is much smaller than the March of Dimes, which allowed me to be much more active as a volunteer. I was able to use my writing and editing skills to work on the newsletter – and when I suggested that someone do a review of the available pregnancy literature based on how well they cover preeclampsia, I was given the opportunity to conduct that research and write the report myself. This was something I had been doing informally in bookstores for a while anyway, so it felt good to be able to look at the literature and confirm that the information really is severely lacking if not downright misleading in a large number of so-called comprehensive books. It really isn’t my fault that I missed the symptoms.
This year, I am coordinating the Orange County, California Promise Walk in Irvine as part of the foundation’s main fundraising campaign on May 18. I am hoping to bring a mental health expert from the California Maternal Mental Health Collaborative out to the walk to talk to the moms about dealing with the emotional impact of their birth experiences. Many of these moms lost babies, delivered preemies, or suffered severe health issues of their own. Our community as a whole is at a very high risk for mental health issues, myself included.
It wasn’t until this year – 6 years after the birth of my son – that I finally sought professional help dealing with the PTSD from the very difficult birth experience. I feel that the volunteer work helped fill that spot for the past 6 years and brought me to the point where I can now process the trauma in a healthy way. I am not happy that I had eclampsia, but I am beyond grateful for all of the great people that it has indirectly brought into my life.
To have to wait 6 years to receive the vital treatment for PTSD is a travesty. We are so thankful that Jennifer survived both the initial trauma, but endured its legacy of traumatic stress that lingers today. Unfortunately, PTSD subsequent to traumatic childbirth is growing in prevalence, and under-recognized by the majority of women’s health and maternity care providers. I have learned a great deal from Jennifer and look forward to the work she and her colleagues will continue to do for the benefit of all women.
1. WHO. Trends in maternal mortality: 1990 to 2008 estimates developed by WHO, UNICEF, UNFPA and The World Bank, World Health Organization 2010, Annex 1. 2010. http://whqlibdoc.who.int/publications/2010/9789241500265_eng.pdf. Last accessed:January 3, 2011.
2. Guise, J-M. Anticipating and responding to obstetric emergencies. Best Practice and Research Clinical Obstetrics and Gynaecology. 2007; 21 (4): 625-638
3. American College of Obstetricians and Gynecologists. Diagnosis and management of preeclampsia and eclampsia; ACOG Practice Bulletin No. 33. Obstetrics & Gynecology. 2002;99:159-167.
Birth Trauma, Childbirth Education, Depression, Guest Posts, Maternal Mental Health, Maternal Mortality, Maternity Care, News about Pregnancy, Postpartum Depression, Pre-eclampsia, Pre-term Birth, Pregnancy Complications, PTSD