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Why the California Toolkit: “Improving Health Care Response to Preeclampsia” Was Created

February 6th, 2014 by avatar

by Christine H. Morton, PhD

Researcher and Lamaze International Board Member Christine H. Morton, Phd shares information about a just released Toolkit on educating professionals about preeclampsia and it’s potentially very serious consequences.  Dr. Morton discusses how you can get a copy, take a webinar introducing the features and help reduce the number of women impacted by this serious pregnancy illness. – Sharon Muza, Community Manager.

Screen Shot 2014-02-05 at 10.25.11 PMWhen my academic partner and I observed childbirth classes several years ago as part of our Lamaze International-funded research (Morton 2009, Morton et al, 2007), we noted that many childbirth educators included a list of signs and symptoms to watch out for during their initial class meeting with expectant couples.  Some of these signs and symptoms were signals of early labor (mucous plug, leaking amniotic sac, contractions) while others might portend a more serious complication such as placental abruption (bright red bleeding), or preeclampsia (blurred vision, extreme swelling, headache), or worse case scenario, fetal demise (reduced to no fetal movement).  At the time, we wondered about the seeming contradiction of classes ostensibly designed to promote confidence in women’s bodies to give birth while from the outset telling women about things to watch out for, or “warning signs.”  Some instructors advised students to post the list on the fridge or on the bathroom mirror.

Now, after five years working at the California Maternal Quality Care Collaborative, and reviewing hundreds of cases of maternal death, I understand the importance of sharing information with pregnant women (and their partners) so they can understand when a symptom or condition goes beyond normal.  I understand why it is so important for women to know their own bodies, including their normal blood pressure, so they (or their partners) can be effective patient advocates if they sense something doesn’t feel right.

It’s an important balance for educators and other birth professionals to discuss the normality of physiological birth alongside the reality that about 8-12% of women will have medically complicated births. (Creanga, 2014), (Fridman, 2013) I remember hearing from partners who wanted to know what to look out for, so they could fulfill their roles as “protectors” as well as “co-creators of sacred space,” as one educator referred to them. Screen Shot 2014-02-05 at 10.25.45 PM

Preeclampsia is the second leading cause of pregnancy-related death in California, accounting for 17% of all deaths. (Druzin et al, 2014.) Preeclampsia is a severe obstetric condition characterized by high blood pressure, which left untreated, can lead to stroke, prematurity and death of women and babies.  As part of the California Pregnancy-Associated Review (CA-PAMR), an expert committee analyzed the medical records of 25 women who died of preeclampsia.  The committee identified contributing factors, and opportunities to improve care. All of the California deaths due to preeclampsia had some chance of preventability, with nearly half having a good-to-strong chance to alter the outcome.  For every woman who dies, at least 40-50 experience severe complications requiring ICU admission and another 400-500 experience moderate-to-severe complications from preeclampsia or other hypertensive disorders.   One important factor in the deaths was delayed recognition and response to signs and symptoms of severe hypertension.

Screen Shot 2014-02-05 at 10.26.04 PMThe lessons we learned from reviewing those cases were used to inform the development of the California Toolkit: Improving Health Care Response to Preeclampsia.  CMQCC and the California Department of Public Health (CDPH), Maternal, Child and Adolescent Health (MCAH) Division collaborated to develop and disseminate this toolkit using Title V MCH funds provided by CDPH-MCAH. The goal of this toolkit is to guide and support obstetrical providers, clinical staff, hospitals and healthcare organizations to develop methods within their facilities for timely recognition and organized, swift response to preeclampsia and to implement successful quality improvement programs for preeclampsia that will decrease short- and long-term preeclampsia-related morbidity in women who give birth in California. (Druzin et al 2014).

Experts from obstetrics, perinatology, midwifery, nursing, anesthesia, emergency medicine and patient advocacy relied on best evidence, expert opinion and the Toolkit includes:

  • Compendium of Best Practices: eighteen articles on multiple topics around hypertensive disorders
  • Appendices: Collection of all Care Guidelines including tables, charts and forms that are highlighted in Article Sample forms for policy and procedure
  • Slide set for Professional Education: slides that summarize the problem of and the best practices for preeclampsia to be used for local education and training

Of particular interest, the toolkit addresses the management of severe preeclampsia < 34 weeks, the importance of recognition and treatment of delayed postpartum preeclampsia/eclampsia in the emergency department and early postpartum follow-up upon discharge for women who were diagnosed with severe hypertension during childbirth.  The Preeclampsia Foundation was a partner on the Task Force, and has created educational material for pregnant women and their families, in English and Spanish.  Hospitals, clinics and childbirth educators can order these materials at no cost (shipping and handling only) from the Foundation.  There is a free webinar available on February 25th introducing the toolkit to professionals.preeclampsia

Thinking back to my childbirth education observations, I am struck that the educators never mentioned preeclampsia or defined it.  Not one suggested women should know their normal blood pressure.  The Preeclampsia Foundation commissioned a report in 2012 which reviewed the top pregnancy and childbirth advice books and found that many either failed to mention the condition or contained misleading or incorrect information about preeclampsia, HELLP or eclampsia.  With hypertensive disorders of pregnancy on the rise (as well as other maternal morbidities) (Fridman et al 2013; Creanga et al 2014) it’s important for childbirth educators and birth professionals to help women understand signs and symptoms and to know what those signs and symptoms might mean.

Even as we know most women are healthy and are highly unlikely to experience a severe complication in pregnancy and childbirth, we must also acknowledge that some women do, and by leaving them out of the classes and books, we silence their reality.  As one woman noted in a research study on experiences of severe pregnancy complications said:

There’s a lot of information out there or bad information that can make you feel like you did this to yourself. But there’s every kind of woman that has gone through some sort of thing. You don’t see red flag kind of behaviors in the population of women who get preeclampsia or a lot of the other kinds of issues that can cause childbirth injury and the bad childbirth experiences. I understand the way the books put it is that they want to reassure you that it’s not going to happen to you, but the kind of flipside of that is to say that when it does happen to you, where are you then? You know? I think they set you up for PTSD, for postpartum depression. They kind of make it seem, like, “Oh hey! You’re fine. Everything’s going to be great. It’s not going to happen to you” so what are you left when it does happen? (Lisa, in Morton et al 2103).

We owe it to pregnant women to give them the information they need to understand the fullness of their pregnancy and childbirth experiences, whether normal or complicated.  The Preeclampsia Toolkit will hopefully help those clinicians who care for childbearing women better manage and reduce the severity of complications when they arise.  Since its release last month, the Toolkit has been downloaded over 1376 times in all 50 states states (plus District of Columbia and Puerto Rico) along with 5 countries; Australia, Canada, Wales, Mexico and Malaysia.  The response to this Toolkit has been incredible and it is clear that there is a need for practical tools that hospitals and clinicians can use to improve their response to hypertensive disorders of pregnancy. 

Do you share information about preeclampsia in your classes and with your clients?  How do you discuss it?  What are your favorite learning tools?  Let us know in the comments. – SM

References

Creanga, MD, PhD, Andreea A. ; Cynthia J. Berg, MD, MPH, Jean Y. Ko, PhD, Sherry L. Farr, PhD, Van T. Tong, MPH, F. Carol Bruce, RN, MPH, and William M. Callaghan, MD, MPH, Maternal Mortality and Morbidity in the United States: Where Are We Now? JOURNAL OF WOMEN’S HEALTH, Volume 23, Number 1, 2014, DOI: 10.1089/jwh.2013.4617

Druzin, MD Maurice; Laurence E. Shields, MD; Nancy L. Peterson, RNC, PNNP, MSN; Valerie Cape, BSBA. Preeclampsia Toolkit: Improving Health Care Response to Preeclampsia (California Maternal Quality Care Collaborative Toolkit to Transform Maternity Care) Developed under contract #11-10006 with the California Department of Public Health; Maternal, Child and Adolescent Health Division; Published by the California Maternal Quality Care Collaborative, January 2014.

Fridman, PhD, Moshe; Lisa M. Korst, MD, PhD, Jessica Chow, MPH, Elizabeth Lawton, MHS, Connie Mitchell, MD, MPH, and Kimberly D. Gregory, MD, MPH, Trends in Maternal Morbidity Before and During Pregnancy in California, Am J Public Health. Published online ahead of print December 19, 2013: e1–e9. doi:10.2105/AJPH.2013.301583)

Morton, C. H. (2009). A fine line: Ethical issues facing childbirth educators negotiating evidence, beliefs, and experience. The Journal of perinatal education, 18(1), 25.

Morton, C.H., A. Nack, and J. Banker, Traumatic Childbirth Experiences: Narratives of Women, Partners, and Health Care Providers. Unpublished manuscript. 2013.

Morton, C. H., & Hsu, C. (2007). Contemporary dilemmas in American childbirth education: Findings from a comparative ethnographic study. The Journal of perinatal education, 16(4), 25. Chicago

 

Childbirth Education, Guest Posts, Maternal Mortality, News about Pregnancy, Pre-eclampsia , , , , ,

Seeking Real Life Stories from Women Who Have Experienced Pregnancy & Birth Complications

May 28th, 2013 by avatar

© http://flic.kr/p/3mcESR

Both expectant families and childbirth professionals alike would like nothing more than pregnancy and birth to remain uncomplicated and proceed normally. We can celebrate when that happens but we have a responsibility to also teach and share about some of the variations from normal that may come up during pregnancy and birth.

Cara Terreri, the Community Manager for Lamaze International’s parent blog, Giving Birth with Confidence, is looking for women’s input on pregnancy complications for a new series that she will be running in the coming months.

If you have had personal experience with one or more of the following (or know students, clients or patients who do) and would like to participate, please contact the blog manager, Cara Terreri at cterreri@lamaze.org

  • Preeclampsia/eclampsia & HELLP
  • Placental abruption/hemorrhage 
  • Placenta previa/accreta
  • Intrauterine growth restriction (IUGR)
  • Incompetent/weakened cervix
  • Hyperemis Gravidarum
  • Preterm labor
I look forward to reading this upcoming series and sharing the stories with my students and clients.  Thank you for any help you might provide.

Giving Birth with Confidence, Lamaze International, News about Pregnancy, Patient Advocacy, Pre-eclampsia, Pregnancy Complications , , , , ,

The Unexpected Project: Pre-eclampsia Researched, Revealed and Reviewed. Part II of an interview with Jennifer Carney

February 7th, 2013 by avatar

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 , , , , , , , , , , ,

Beyond Downton Abbey: The True Life Trauma of Pre-eclampsia, Eclampsia, and Its Psychological Aftermath—An Interview with Jennifer Carney of The Unexpected Project

February 5th, 2013 by avatar

By Walker Karraa

Regular contributor Walker Karraa interviews Jennifer Carney, a mother of two, who suffered from eclampsia at the beginning of her third trimester.  Jennifer shares her real life story, on the heels of a favorite character’s similar experience on the popular TV show “Downton Abbey.”  Today, we learn about Jennifer’s experience and on Thursday we learn more about resources and organizations working hard to make this potentially deadly disease less harmful to pregnant and postpartum women.  - Sharon Muza, Community Manager

Introduction: 

http://flic.kr/p/dJBJhW

The recent episode of “Downton Abbey” brought much needed attention to the maternal health issue of pre-eclampsia. Why is it we rely on fiction for permission to get real? Where is the line between evidence-based research and fictional representations of the lack of it? How do we encourage each other and the next generation of maternal health advocates to harness the undeniable power of media but not become part of a social construction of maternal mortality as not real? As a qualitative researcher, I believe that some of our best evidence stems from researching real experiences from real women. It is my pleasure to introduce a real woman who experienced the full range of eclampsia and its psychological aftermath: Jennifer Carney.

Note: Consultation with Science and Sensibility contributor, Christine Morton, PhD was conducted to insure accurate and current statistical data regarding pre-eclampsia and eclampsia. 

Walker: Jennifer, can you tell us your story?

JC: My second pregnancy was easier than my first. Up until it wasn’t. I conceived as soon as we started trying. We had no soft markers on the ultrasounds, no need for an amnio, and no borderline gestational diabetes. I was only 34 and with a successful full-term first pregnancy; I was considered “safe” from preeclampsia. The only risk factor I had was my weight, but even with that, statistically my risks were much lower than for a healthy first time mom. There was something about it that seemed too easy. I felt like the other shoe was going to drop – but I never imagined that it would fall with such force.

In my 32nd week, I began to feel ill – like I had the flu. I took a day off from work to rest and recover. I thought I was getting better, but that night I began feeling worse. I called in sick to work again – it was a Friday – and my husband and son went off to work and daycare. I was alone. I laid down and slept for about 4 hours. When I awoke, I felt much, much worse. The headache radiated out from behind my eyes. I was seeing spots. I was incapable of thinking clearly. The phone rang several times, but the receiver was not on the base. I couldn’t locate it before the answering machine picked up. By this point I was aware that something was very wrong, but I wasn’t able to do anything about it. I stayed on the couch, barely moving for as long as I could.

Signs and Symptoms of Pre-eclampsia

  •  High blood pressure. 140/90 or higher. A rise in the systolic (higher number) of 30 or more, or the diastolic (lower number) of 15 or more over your baseline might be cause for concern.
  • Protein in your urine. 300 milligrams in a 24 hour collection or 1+ on the dipstick.
  • Swelling in the hands, feet or face, especially around the eyes, if an indentation is left when applying thumb pressure, or if it has occurred rather suddenly.
  • Headaches that just won’t go away, even after taking medications for them.
  • Changes in vision, double vision, blurriness, flashing lights or auras.
  • Nausea late in pregnancy is not normal and could be cause for concern.
  • Upper abdominal pain (epigastric) or chest pain, some- times mistaken for indigestion, gall bladder pain or the flu.
  • Sudden weight gain of 2 pounds or more in one week.
  • Breathlessness. Breathing with difficulty, gasping or panting.

If you have one or more of these signs and symptoms, you should see your doctor or go to an emergency room immediately. 
Source: Preeclampsia Foundation

Sometime after 5:00, I realized that I was going to have to call someone else to pick up my son at daycare by the 6:00 closing time. I managed to get to my feet and stagger toward the kitchen. I reached out to steady myself on the counter and missed. I fell to my left, onto the hard tile floor in front of the stove. I knew this was bad, but all I could think was that I had to hold on and that someone would be coming. I told myself that I couldn’t let this happen. Shortly thereafter, I tried to scream and felt the beginning of what I later learned was a tonic-clonic or grand mal seizure.  

This was eclampsia – full blown seizures caused by extremely high blood pressure. Somehow, I held on. Somehow, I held on in this state for something like 3 full hours. I have no way of knowing how many seizures I had in that time. When my friend arrived after 8:00, she found me on the floor. I came to long enough to answer her question – “yes, I know where I am. I’m fine.” I tried to get up – and immediately started seizing again. She called 911 and within minutes the paramedics arrived. 

My son was born, not breathing, about an hour later. The doctors were able to revive him, thankfully. He went off to the NICU and I was sent to the ICU. Two days later, I regained consciousness. I was on a respirator and completely disoriented. I was later diagnosed with HELLP syndrome, eclampsia, pneumonia, acute respiratory distress syndrome (ARDS), and sepsis – any of which can be fatal on their own. My son was moved to another hospital with a larger NICU, and I spent 8 days in the hospital where he was born. I saw him briefly before they transferred him – but was unable to hold him until after I was discharged – more than a week after he was born. For the next 20 days, I was only able to see him and hold him during daily visits to the NICU. It would be 4 full weeks from his birth before we could take him home to meet his 4 ½  year old brother for the first time. This was definitely not what we had envisioned.

This experience changed my entire perspective on life. It was the first significant health crisis that I had ever faced and it shook my sense of security and safety. It took a long time to recover physically from the trauma and emotionally I was just a wreck. I was aware that Post-traumatic Stress Disorder (PTSD) was a possibility, but I think the picture I had in my mind of what PTSD was turned out to be very different from the ways in which I experienced it. I had envisioned a quick, big breakdown – but the reality was much subtler. At first, I experienced an aversion to seeing pregnant women. I wanted to warn them, but I also could barely look at them. It manifested in other ways, too – dreams about seizures, muscle spasms, intrusive thoughts. But it felt manageable and the antidepressants helped control the runaway anxiety that had hampered my first postpartum experience 4 years earlier.

Photo: J. Carney 

The mental health issues were helped by the antidepressants, but I wish that I had tried therapy much sooner. It’s doing wonders for me now – but I waited over 6 years to try it. Today, my preemie is in kindergarten and doing well. Aside from my son, getting involved with the March of Dimes and Preeclampsia Foundation has been by far the best part of the whole experience. I wouldn’t change that part, at all.

Walker: How is mental health neglected in the overall understanding of the topic, treatment, and recovery?

JC: This is a huge problem. I got great care while I was in the hospital. I saw social workers, chaplains, and a wide variety of people who inquired after my pain levels and my coping skills. The problem with this is that I was on massive pain killers the whole time. Percocet and morphine can mask emotional pain as well as physical pain. I’m sure I came off as reasonably well adjusted to the whole experience, despite the mental confusion left over from the seizures and the serious health issues that remained. And I was relatively okay. Even during the month-long NICU stay, I was doing all right. I was sleeping well, eating, taking care of myself – but I was also still on Percocet. It smoothed over the rough edges.

It wasn’t until the help dried up, the prescriptions ran out, and the reality of being at home by alone with an infant to care for that the walls started to come down again. Here I was at the scene of the initial trauma, cooking at the same stove that I had seized in front of for hours, responsible for a premature infant who needed drugs to remind him to breathe. This is when I needed the help. This is when I needed information on PTSD and postpartum depression (PPD). This is when I needed support. And as I began the long process of understanding what had happened and why, I found I needed even more support to help me wrap my head around it all.

As I noted while talking about myths, there is a pervasive culture of blame in the overall birth discussion regarding preeclampsia. It can be hard to find information that doesn’t make you feel that you somehow brought this condition on yourself. I looked at the risk factors and the arguments about lifestyle, obesity, and diet – and found a lot of things that sounded like they made sense. But they only made sense if I internalized them and blamed myself for the shortcomings. Maybe it was my fault. This, as you can imagine, does not help the feelings of depression and trauma. It took a LONG time for me to come to the conclusion that there was no way for me to have known that this would happen or to have prevented it. Statistically speaking, I had a very low chance of developing eclampsia even with the risks factored in. Statistically speaking, my son and I should not have survived, either. But we did – and now I want to make sure that I use that in a meaningful way. 

Walker: Did your childbirth education prepare you for your experience?

JC: Heck no. I only took classes with my husband before our first child. We weren’t planning to take the classes again with the second, but since he was born at 7 months, we probably would have missed most of them even if we had planned to. I distinctly remember the childbirth educator talking about her own response to sleeplessness, which was a sort of slap happy, giddy reaction. She mentioned PPD, but not in any real way that conveyed the depths or potential seriousness of the condition. We also received almost no information on pregnancy complications. To me, preeclampsia meant high blood pressure – and I had never had problems with that before. It was totally off my radar. Plus, Preeclampsia very rarely happens in a second pregnancy if it didn’t happen in the first. So, no one prepared me for it. Not my doctor, not my classes, not my books.

Walker: What recommendations do you have for childbirth educators and doulas regarding this issue?

JC: Really, I think it comes down to trusting that the moms you are helping can handle the information that they NEED to know. I was alone. If I had known that these symptoms could mean eclampsia or preeclampsia, I might have been able to save myself from the seizures – which would have also likely saved me from the ARDS and pneumonia. My ICU stay might have not happened. My son was going to be born early – but if I had gone to my doctor or called an ambulance myself, it might not have been so close a call. It’s not my fault that I didn’t know – but it could have been tragic.  

Know the signs and symptoms. Know that a woman with severe PE might be having cognitive issues – confusion, and vision problems. Don’t ask her to drive. Don’t downplay distress. And take complaints of headaches, upper quadrant pain, nausea, diarrhea, shoulder pain, visual disturbances, and a general feeling that something is “off” seriously. And if you have a client or patient that experiences something like this, please follow up and ask about mental health issues. Be careful not to ask questions that can be answered with the words: “I’m fine”. Dig deeper.

Closing Thoughts

How might we increase our understanding of this issue through Jennifer’s story? Is it possible to begin a dialogue here–one in which we agree to change paradigms of learning and knowing women’s experiences beyond an episode of a fictional television show?  Jennifer presents an exemplar synthesis of the fullest range of insight possible when empirical and phenomenological considerations are employed.. Her lived experience combined with and through her knowledge of the evidence creates an exemplar of how knowing and knowledge cannot be divided if the pursuit of knowledge is truly desired.

In the next installment, scheduled for February 7th,  Jennifer reflects on common myths about PE, and her work with the Unexpected Project and the Preeclampsia Foundation.   

Birth Trauma, Childbirth Education, Depression, Guest Posts, Maternal Mental Health, NICU, Postpartum Depression, Pre-eclampsia, Pre-term Birth, Pregnancy Complications, PTSD , , , , , , , , , , , , ,

Pregnancy and Childbirth Advice Books through the Lens of Preeclampsia

July 3rd, 2012 by avatar

Guest post by Science & Sensibility contributer Christine H. Morton, PhD

(Full disclosure:  the organization I work for, CMQCC, has been working with representatives from the Preeclampsia Foundation over the past year on the CMQCC task force developing a Preeclampsia Toolkit, and I am a big fan of their executive director, Eleni Tsigas, and frequent re-tweeter of @preeclampsia).

The Preeclampsia Foundation released a new guide to pregnancy and birth books last month, a comprehensive report distilled from a review of more than 60 such books, on their accuracy, coverage and clarity of information on hypertensive complications in pregnancy.    As readers of S&S are well aware, there are numerous books geared to expectant couples, pregnant women, and male partners; by authors who claim their authority by virtue of their clinical degrees and practice, their teaching and research credentials, as well was their personal and celebrity experience.   This is the first time I’ve seen a guide to pregnancy and birth advice books from the lens of a serious disorder in pregnancy:  preeclampsia.

May was Preeclampsia Awareness Month. 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 each year.1 Preeclampsia is a leading cause of pregnancy-related death in the US and in the state of California, and one of the most preventable. Adverse neonatal outcomes are higher for infants born to women with pregnancies complicated by hypertension. Care guidelines have recently been developed in many countries, including the UK, Canada and Australia, with a revised practice bulletin to be released from ACOG later this year. A key focus in many of these guidelines is accurate measuring of Blood Pressure, and standardized pathways of care, depending on the clinical situation. These guidelines note that one reason for their creation is the clear evidence that the surveillance of women with suspected or confirmed preeclampsia is variable between practitioners.2,3
 Seeking to understand their experience, women turn to books, their childbirth educators and doulas to help them navigate through this new and unexpected turn into complicated pregnancy.   While many women have healthy pregnancies and births, those who are having symptoms, or have been diagnosed with preeclampsia, eclampsia or HELLP syndrome, need accurate and clear information.    Early detection, and treatment, is a proven way to lessen the severity of the disease, and mitigate its impact.  Are some pregnancy and childbirth guidebooks better than others in informing readers about these issues?

To answer this question, researchers Jennifer Carney, MA and Douglas Woelkers, MD reviewed more than 60 pregnancy and childbirth advice books and ranked them using a consistent set of criteria in five categories: Depth of Coverage, Placement of Coverage, Clarity and Accuracy of Information, Description of Symptoms, and Postpartum Concerns.  In their methods section, they note that

“Books were downgraded for out-of-date information, missing or inaccurate information and placement issues, including inaccurate or inadequate indexing.    Of the more than 60 books reviewed, none ranked above “8” in all five categories. In fact, only a handful of books scored above “8” in the category of “Postpartum Concerns,” since many books routinely state that the cure for preeclampsia and related disorders is the birth of the baby.”

Childbirth educators and doulas have strong views on the ‘best’ books to guide women through pregnancy and childbirth and might be surprised to find that even best selling books like Ina May’s Guide to Childbirth (2003) scored only a 2.6, while the much excoriated, yet highest selling advice book: What To Expect When You’re Expecting (2009) ranked last in the Preeclampsia Foundation’s TOP TEN list, with a score of 7.2.  All books reviewed are listed in the Appendix of the report.

One helpful feature of the report is a sampling of questionable claims found in pregnancy guidebooks:

“Preeclampsia never happens before the twentieth week, but your blood pressure may start to rise steadily after this. Delivery of the baby and placenta ends the problem.” From Conception, Pregnancy, and Birth by Miriam Stoppard. In rare instances preeclampsia can occur prior to 20 weeks; it can also occur up to six weeks postpartum.

The report further explains why it’s important for books on childbirth to also mention preeclampsia, eclampsia and HELLP Syndrome, since this disease can develop immediately prior to, during or after delivery.  Among the childbirth books, the reviewers found,

Only Penny Simkin’s book The Birth Partner: A Complete Guide to Childbirth for Dads, Doulas, and All Other Labor Companions (2007) provides adequate information about preeclampsia, eclampsia, and HELLP syndrome. Although this book incorrectly uses the term pregnancy-induced hypertension (PIH) to describe preeclampsia and eclampsia, it provides a useful list of symptoms and the possible treatments, including cesarean delivery. It also presents some of the emotional issues that might arise from a diagnosis of PIH and includes some information on HELLP syndrome. It acknowledges the possibility of postpartum preeclampsia and eclampsia, something that many of the general pregnancy books omit.

The report can help childbirth educators and doulas point women to the best information about hypertensive disorders, but its authors also hope these results will guide authors in future revisions.  At the very least, up to date terminology, accurate information and complete indexing is critical in revisions. Books geared primarily to women with relatively healthy pregnancies always face the challenge of balancing reassurance, the optimality of physiological birth and the diverse range of potential complications in pregnancy.  Yet such books can point readers to resources like the Preeclampsia Foundation for up-to-date and user-friendly information and community pages.

Take-away points for Childbirth Educators and Doulas:

  • Check your website and be sure to link to Preeclampsia Foundation website for unbiased, evidence-based information on this disease.  They are on Facebook too.
  • Tell your students to ask about their blood pressure at all prenatal visits and during labor.  They should know what their ‘normal’ range is, and if their BP is ever above 140 systolic or 90 diastolic, to be alert to signs and symptoms of preeclampsia, and report these changes to their care providers.
  • Many factors can affect BP readings:  BP cuff size should be appropriate, especially among women with a high BMI; the measurement should be taken while sitting, with arm at heart level; automated BP machines may underestimate the BP.
  • Remind pregnant women (and their partners) that although lots of attention will naturally be focused on the baby, they have to be alert to the new mother’s health symptoms postpartum too.  While postpartum is a whole new normal, women need to know that any significant bleeding, fever, headaches, nausea, or visual disturbances, are NOT normal, and they should follow up with their health care provider immediately.

Preeclampsia is a serious, if unlikely, complication of pregnancy.  Women diagnosed or at risk for developing hypertensive disorders of pregnancy can find accurate information for all literacy levels (and some Spanish language resources), as well as a supportive community at the Preeclampsia Foundation, a US-based 501(c)(3) not-for-profit organization whose mission is to reduce maternal and infant illness and death due to preeclampsia and other hypertensive disorders of pregnancy by providing patient support and education, raising public awareness, catalyzing research and improving health care practices.

 References

1. American College of Obsetricians and Gynecologists. Diagnosis and management of preeclampsia and eclampsia; ACOG Practice Bulletin No. 33. Obstetrics & Gynecology. 2002;99:159-167.

2. Repke JT PM, Holzman GB, Schulkin J. Hypertension in Pregnancy and Preeclampsia: Knowledge and Clinical Practice Among Obstetrician-Gynecologists. Journal of Reproductive Medicine. 2002;47(6):472-476.

3. Caetano M OM, von Dadelszen P, Hannah ME, Logan AG, Gruslin A, Willan A, Magee LA. A Survey of Canadian Practitioners Regarding Diagnosis and Evaluation of the Hypertensive Disorders of Pregnancy. Hypertens Pregnancy. 2004;23(2):197-209.

4.  Hogan JL, et al.  Hypertens Pregnancy. Body Mass Index and Blood Pressure Measurement during Pregnancy. 2011;30(4):396-400.  PMID: 20726743

Read more about Christine H. Morton, PHD on our contributor page.

 

 

 

 

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