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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.

Closing Thoughts

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.

References

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 , , , , , , , , , , ,

  1. February 7th, 2013 at 16:27 | #1

    And thank you Jennifer for being willing to share your story and experience with birth professionals and consumers, so that we can learn and appreciate your experience.

  2. February 9th, 2013 at 06:49 | #2

    Hi Walker and Jennifer – great article and education about pre-eclampsia. I had no idea of the prevalance and lack of risk factors. thanks, Kathy

  3. February 9th, 2013 at 19:38 | #3

    Thanks, Kathy. It seems that education is one of the biggest hurdles when it comes to understanding preeclampsia. I knew almost nothing about it until well after it happened. It can present in so many different ways, too – and so many of the symptoms are kind of innocuous. Even doctors miss it sometimes. When you add in HELLP syndrome, you can go from symptom-free to full-blown emergency in very little time.

  4. February 12th, 2013 at 07:18 | #4

    The Author needs to look into more of the research on the subject of Diet in pregnancy. Check out the series of articles that do detail the research on this subject. It is a myth that it’s just protein, and there are many common misconceptions about Dr. Brewer’s work. Please read all three before commenting.
    Nutrition during Pregnancy: http://healthybirth.net/?page_id=126
    Preventing Pregnancy Complications with Nutrition: http://www.rabn.org/pdf/PreventingProblems.pdf
    Prematurity is Preventable! : http://www.rabn.org/pdf/PreventingPrematurity.pdf

  5. avatar
    Brandi Bigelow
  6. avatar
    Susan Goodhue
    February 13th, 2013 at 05:38 | #6

    Amy Haas- I developed pre-eclampsia and HELLP syndrome POST- PARTUM. So to make the statement and place blame on mother’s who lost their lives, nearly lost their lives, lost their children, or nearly lost their children is cruel, insensitive, and totally out of line. Also, every pregnancy is different in case while reading all the No. 1 Best Selling ” Heathly Pregnancy books”, you missed that info. For the sake of argument let’s put that aside and I’ll tell you about MY experience. For 36 weeks and 2 days I had a completely normal pregnancy. I was diagnosed at 32 weeks with gestational diabetes (save the AH HA!) which was completely controlled with diet. When the glucose test came back my ob was baffled. He said ‘You are the last person I would ever expect to have GD’. I am 5’0 and weigh 90lbs. My normal blood pressure has NEVER been above 90/60. So at 36 weeks and 4 days when my child arrived in this world via emergency C-section to save both of ours lives, everyone was shocked to say the least. And TWO DAYS LATER as I lay in a hospital bed in organ failure with a crash cart waiting next to me, being told you can’t get out of bed you’ll stroke (BP was 165/110), shock wasn’t the word. The lower half of my body swelled to four times it’s normal size, and I couldn’t walk on my enormous ankles if I wanted to. From my ribcage to the tips of my toes i was purple from the way the blood settled after my platelets crashed. My incision drained and oozed blood for a month, which ended up being infected with Staph. My biggest regret is not about anything I ate while I was pregnant, it’s that I spent the first week of my son’s life chained to a hospital bed and his first month unable to care for him. But thanks, I’ll keep those links handy for next time around.

  1. February 7th, 2013 at 17:06 | #1