24h-payday

Archive

Archive for the ‘Pre-eclampsia’ Category

New Research: Majority of Preeclampsia-Related Maternal Deaths Deemed Preventable

May 12th, 2015 by avatar

By Eleni Z. Tsigas

Preeclampsia Awareness Month 2015May is Preeclampsia Awareness Month and the journal Obstetrics and Gynecology highlighted some new research published by doctors and researchers at the California Maternal Quality Care Collaborative that demonstrated that the majority of preeclampsia-related deaths could have been prevented.  This is significant because preeclampsia is one of the top perinatal causes of death. Today on Science & Sensibility, Preeclampsia Foundation Executive Director Eleni Z. Tsigas provides an update on this new research and important facts that birth professionals should know.  As childbirth educators, along with teaching families about normal labor and birth, we have an obligation to share information about warning signs and potential complications.  While not as much “fun” as teaching how to cope with a contraction, it is equally important.  Have you checked out the information available at the Preeclampsia Foundation‘s website?  There is a great short video, class tear sheets and even information en español.  How do you teach about preeclampsia to the families that you work with?  Let us know in the comments section. – Sharon Muza, Science & Sensibility Community Manager

Research published in the April 2015 issue of Obstetrics & Gynecology shows that 60 percent of preeclampsia-related maternal deaths were deemed preventable. This large study – Pregnancy-Related Mortality in California: Causes, Characteristics, and Improvement Opportunities – analyzed U.S. pregnancy-related mortality administrative reports and medical records for each maternal death to identify the causes and contributing factors, and improve public health and clinical practices.

Over the last 20 years, a previous decline in maternal deaths has reversed and is cause for concern. The 2009 U.S. pregnancy-related mortality rate was 17.8 deaths per 100,000 live births, up from 7.7 per 100,000 in 1997 and above that of other high-resource countries.

One of every eight U.S. births occurs in California, resulting in more than 500,000 annual deliveries with extensive racial and ethnic diversity. With California’s large population-based sample, this study provides a unique opportunity to compare major causes of pregnancy-related mortality and identify improvement opportunities.

Preeclampsia-related maternal death deemed most preventable

Among the 207 pregnancy-related deaths from 2002 to 2005 studied in California, preeclampsia or eclampsia were identified as one of the five leading causes. The others were cardiovascular disease, hemorrhage, venous thromboembolism, and amniotic fluid embolism.

Of the five leading causes of death, preeclampsia was deemed one of the most preventable – preeclampsia-related deaths had a good-to-strong chance of preventability, estimated at 60%.

Healthcare provider factors were the most common type of contributor, especially delayed response to clinical warning signs followed by ineffective care.

Patients play important role in preventing preeclampsia-related deaths 

The leading patient factors among preeclampsia deaths were delays in seeking care (42%), presumed lack of knowledge regarding the severity of a symptom or condition (39%), and underlying medical condition (39%).

Preeclampsia deaths were most common among foreign-born Hispanic and African American women and associated with early gestational age, consistent with studies demonstrating the increased severity of early-onset preeclampsia.

These findings illustrate the need for public health interventions aimed at helping all women understand and recognize their risks and attain optimal pre-pregnancy health and weight.

It’s worth noting that since the study period, patient awareness has improved, led by several Preeclampsia Foundation education initiatives – currently preeclampsia awareness among pregnant women is 83%, according to a survey conducted last year by BabyCenter®.

The findings also underscore the need for focused approaches to improve care such as hospital-based safety bundles as well as comprehensive programs for patient education, communication, and teamwork development. Read the full report here.

Maternal health improvement initiatives underway 

As these Pregnancy-Related Mortality research findings are announced, several states have already moved forward with maternal health improvement initiatives. Recently the California Maternal Quality Care Collaborative (CMQCC), Hospital Corporation of America, and the American College of Obstetricians and Gynecologists released guidelines and quality improvement toolkits with standardized approaches to recognize and treat severe hypertension, and to increase awareness of atypical clinical presentations and patient education.

CMQCC’s Preeclampsia Toolkit incorporated the Preeclampsia Foundation’s Illustrated Symptoms Tear Pad that effectively informs women who are pregnant or recently gave birth about preeclampsia, which can strike up to six weeks after delivery. Developed by the Preeclampsia Foundation and researchers at Northwestern University Feinberg School of Medicine, the tear pad uses illustrations to describe the symptoms of preeclampsia so they are easily understandable, especially for those with poor health literacy. This toolkit is freely available online and has been downloaded by over 5,100 persons in the United States and more than 60 other countries. It is also being implemented in more than 150 California hospitals as part of the California Partnership for Maternal Safety.

In the year since implementing a Severe Maternal Morbidity Pre- and Post-Toolkit, CMQCC has noted a 34% reduction in maternal adverse outcomes. After implementing Pre- and Post-Hypertension Bundles, the rate of eclampsia has decreased by 31%.

New York joins California in distributing the tear pad throughout the state – as part of a statewide Maternal Preeclampsia Initiative, the New York State Perinatal Quality Collaborative, an initiative of the New York State Department of Health and the New York State Partnership for Patients – has adopted this patient education tool, making it available to all New York birthing facilities.

The Preeclampsia Foundation is proud to play a role in reversing the rate of maternal mortality and severe morbidity; it’s a team effort that requires the combined efforts of public health, clinical and hospital leaders and their institutions, and professional and consumer organizations.

References

Main, E. K., McCain, C. L., Morton, C. H., Holtby, S., & Lawton, E. S. (2015). Pregnancy-related mortality in California: causes, characteristics, and improvement opportunities. Obstetrics & Gynecology, 125(4), 938-947.

About Eleni Z. Tsigas

G8FK7644Eleni Z. Tsigas is the Executive Director of the Preeclampsia Foundation. Prior to this position, she served in a variety of volunteer capacities for the organization, including six years on the Board of Directors, two as its chairman. Working with dedicated volunteers, board members and professional staff, Eleni has helped lead the Foundation to its current position as a sustainable, mission-driven, results-oriented organization.

As a preeclampsia survivor herself, Eleni is a relentless champion for the improvement of patient and provider education and practices, for the catalytic role that patients can have to advance the science and status of maternal-infant health, and for the progress that can be realized by building global partnerships to improve patient outcomes.

She has served as a technical advisor to the World Health Organization (WHO) and participated in the Hypertension in Pregnancy Task Force created by the American College of Obstetricians and Gynecologists to develop the national guidelines introduced in 2013, as well as a similar task force for the California Maternal Quality Care Collaborative (CMQCC). Eleni also serves on the National Partnership for Maternal Safety initiative, the Patient Advisory Board of IMPROvED (IMproved PRegnancy Outcomes via Early Detection), Ireland, and the Technical Advisory Group and Knowledge Translation Committee for PRE-EMPT (funded by the Bill & Melinda Gates Foundation). Eleni is frequently engaged as an expert representing the consumer perspective on preeclampsia at national and international meetings, and has been honored to deliver keynote addresses for several professional healthcare providers’ societies.

Eleni has collaborated in numerous research studies, has authored invited chapters and papers in peer-reviewed journals, and is the Principal Investigator for The Preeclampsia Registry.

A veteran of public relations, she has secured media coverage about preeclampsia in national consumer magazines, as well as newspapers, radio and online. Eleni previously spent 8 years executing and managing strategic communications and public relations for technology and biotech companies with Waggener Edstrom Worldwide and for 6 years prior in the television industry.

She is married, and has had two of her three pregnancies seriously impacted by preeclampsia. 

 

Childbirth Education, Guest Posts, Maternal Quality Improvement, Maternity Care, Pre-eclampsia, Research , , , ,

2014 Preeclampsia Awareness Survey Highlights Need for Education- Educators Play a Key Role

May 13th, 2014 by avatar

May is Preeclampsia Awareness Month and childbirth educators play a key role in informing families about the symptoms of this disease of pregnancy (or postpartum.) Eleni Tsigas, the Executive Director of The Preeclampsia Foundation shares the results of a recent survey quizzing women on their awareness of this potentially deadly disease.  CBEs and others have a responsibility to share information in a calm, factual way duing class so that women are informed but not scared, should this disease present itself during their childbearing year. – Sharon Muza, Community Manager, Science & Sensibility

Preeclampsia_Pledge

As Executive Director of the Preeclampsia Foundation®, the nation’s only patient advocacy organization for preeclampsia and related hypertensive disorders of pregnancy, I’m excited to announce the results of a recent nationwide Preeclampsia Awareness Survey of more than 1,500 expectant and new mothers. These survey findings are driving the Foundation’s strategies associated with National Preeclampsia Awareness Month this month.

The survey, which was conducted by BabyCenter®, shows a high overall awareness of preeclampsia and that it is serious and associated with high blood pressure. There was also near universal knowledge to call a healthcare provider if experiencing symptoms of preeclampsia.

We’re very encouraged by the awareness that’s been raised in recent years, in sharp contrast to our last study six years ago that found very low overall awareness of preeclampsia. But there’s more to do, because this year’s survey also shows low awareness when respondents were asked about specific symptoms associated with preeclampsia.

The more a pregnant woman knows about preeclampsia, the more likely she is to recognize and report symptoms to her doctor or midwife. That improves time to diagnosis and medical evaluation, which saves lives – for both mothers and babies. And that’s why we’re so focused on improving awareness of preeclampsia.

Preeclampsia and other hypertensive disorders of pregnancy remain a leading cause of maternal and infant illness and death. Globally, by conservative estimates, these disorders are responsible for 76,000 maternal and 500,000 infant deaths every year. In the United States, preeclampsia affects one in every 12 pregnancies, and its incidence has increased by 25 percent during the past two decades.

Key Survey Findings

The recent survey of 1,591 women shows high overall awareness of preeclampsia, its severity and link to high blood pressure, and to immediately report symptoms to their healthcare providers:

  • 83% of respondents had heard of preeclampsia and of those women, 99% knew that it is extremely serious, even life-threatening for mother and baby, very serious, or somewhat serious
  •  88% knew that high blood pressure is a sign of preeclampsia
  • 96% would call their doctor or midwife if they experienced symptoms

Results also show areas that the healthcare community needs to address:

  • Raise awareness of the specific symptoms associated with preeclampsia
    • 78% incorrectly linked preeclampsia to swelling of the feet
    • Only 70% correctly linked preeclampsia to headache and vision changes
    • 3 out of 5 women were not sure about several other symptoms
  • Educate women on when preeclampsia can occur and its long-term impact
    • 44% didn’t know that preeclampsia can occur even after the baby is delivered, up to six weeks postpartum
    • 46% didn’t know that women with preeclampsia are at risk for future health problems
  • Improve access to information, regardless of education or income level
    • Compared to the 83% of respondents in general who had heard of preeclampsia,
      • 51% with some high school education had heard of preeclampsia
      • 37% who earned under $25k a year had heard of preeclampsia

Download the Preeclampsia Infographic

Survey Findings Drive Education Campaign

Released in conjunction with Preeclampsia Awareness Month, the survey findings provided the basis of the Foundation’s education campaign launched this month. Its theme – Take the Preeclampsia Pledge: Know the Symptoms. Spread the Word – highlights the importance of early recognition and reporting of symptoms. The campaign features Promise Walks for Preeclampsia™ across the country, social media events, and an easy-to-understand and share video called Preeclampsia: 7 Symptoms Every Pregnant Woman Should Know. (Spanish version)


 Know the Symptoms. Spread the Word.

Early recognition and reporting of symptoms is the key to timely detection and management of preeclampsia. Women who are pregnant or recently delivered should contact their doctor or midwife right away if they experience any of the symptoms listed below, and healthcare providers should be appropriately responsive. While these symptoms don’t necessarily indicate preeclampsia, they are cause for concern and require immediate medical evaluation.

  • Swelling of the hands and face, especially around the eyes (swelling of the feet is more common in late pregnancy and probably not a sign of preeclampsia)
  • Weight gain of more than five pounds in a week
  • Headache that won’t go away, even after taking medication for pain relief
  • Changes in vision like seeing spots or flashing lights; partial or total loss of eyesight
  • Nausea or throwing up, especially suddenly, after mid pregnancy (not the morning sickness that many women experience in early pregnancy)
  • Upper right belly pain, sometimes mistaken for indigestion or the flu
  • Difficulty breathing, gasping, or panting
  • “I just don’t feel right”

It’s also important to know that some women with preeclampsia have NO symptoms. Healthcare providers can only diagnose preeclampsia by monitoring blood pressure and protein in the urine, which is routinely done at prenatal appointments, so keeping all appointments is vital throughout pregnancy and immediately after delivery.

About the Preeclampsia Awareness Survey

The survey was conducted among visitors to the BabyCenter® website from January 17 to January 20, 2014. A total of 1,591 respondents completed the survey; qualified respondents are defined as female U.S. residents, 18 years or older, who are pregnant or have at least one child three years of age or younger.

About the Preeclampsia Foundation

A U.S.-based 501(c)(3) non-profit organization established in 2000, the Preeclampsia Foundation is dedicated to providing patient support and education, raising public awareness, catalyzing research and improving health care practices, envisioning a world where preeclampsia and related hypertensive disorders of pregnancy no longer threaten the lives of mothers and babies. More information can be found at www.preeclampsia.org or by calling toll-free 800.665.9341.

How do you talk about preeclampsia in your childbirth classes?  When do you discuss it?  Are you also sharing that postpartum women can also develop this disease?  Would you consider showing the brief video above highlighting the seven key symptoms.  Let us know how you are discussing this topic in the comments section below. – SM

About Eleni Z. Tsigas 

eleni tsigas head shotEleni Z. Tsigas is the Executive Director of the Preeclampsia Foundation. Prior to this position, she served in a variety of volunteer capacities for the organization, including six years on the Board of Directors, two as its chairman. Working with dedicated volunteers, board members and professional staff, Eleni has helped lead the Foundation to its current position as a sustainable, mission-driven, results-oriented organization.

Eleni is married, and had has two of her three pregnancies seriously impacted by preeclampsia. As a preeclampsia survivor, she is a relentless champion for the improvement of patient and provider education and practices, for the catalytic role that patients can have to advance the science and status of maternal-infant health, and for the progress that can be realized by building global partnerships to improve patient outcomes.

Eleni has served as a technical advisor to the World Health Organization (WHO), is a member of the PRE-EMPT Technical Advisory Group and Knowledge Translation Committee (funded by the Gates Foundation), and participates in the Hypertension in Pregnancy Task Force created by the American College of Obstetricians and Gynecologists (ACOG), as well as a similar task force for the California Maternal Quality Care Collaborative (CMQCC). Eleni is frequently engaged as an expert representing the consumer perspective on preeclampsia at national and international meetings, and as a spokesperson in various public speaking venues. She was honored to deliver The Jim & Midge Breeden Lecture as part of ACOG’s 2012 Annual Clinical Meeting President’s Program.

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

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 , , , , , , , , , , ,

cheap oakleys fake oakleys cheap jerseys cheap nfl jerseys wholesale jerseys wholesale nfl jerseys