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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 , , , , ,

Preeclampsia: Research Roundup and Information for Professionals and Consumers

May 23rd, 2013 by avatar

by Caryn Rogers

May is National Preeclampsia Awareness Month and the Preeclampsia Foundation has been holding Promise Walks all around the country to raise awareness of this disease and generate funds for research.  Caryn Rogers, Senior Science Writer for the Preeclampsia Foundation has provided a research update and information about the etiology of the disease.  The Preeclampsia Foundation is rich in resources for birth professionals and women, including an active forum for mothers dealing with this complication of pregnancy (or postpartum). Lamaze International is a proud web content sponsor of the Promise Walk.- Sharon Muza, Science & Sensibility Community Manager

The Preeclampsia Foundation would like to thank Lamaze International and Science & Sensibility for this opportunity to present a research overview during National Preeclampsia Awareness MonthPreeclampsia, which means “before the lightning” in Greek, is a leading cause of maternal and neonatal mortality and morbidity worldwide. The syndrome probably got the name from its tendency to strike suddenly, out of nowhere. One in ten women develops gestational hypertension during her first pregnancy, while about one in twenty develops preeclampsia. The latter condition has historically been poorly understood, but new research has led to a deeper understanding of preeclampsia. Some of the new research has been supported with Preeclampsia Foundation Vision Grants over the last ten years.

What is Preeclampsia

Preeclampsia is a multifactorial, heterogeneous pregnancy syndrome diagnosed after the appearance of both hypertension and proteinuria (protein in the urine) any time after mid-pregnancy. Its cause is still unknown. Though called the “disease of theories,” research is closing in on triggers of the disorder, which will help to design specific treatments. Certain women have predisposing factors such as the presence of other diseases that make preeclampsia more likely. There may be specific genetic factors. While the disease’s primary symptoms are hypertension and proteinuria, many other organ systems may be involved, especially the liver, brain, and platelets. Symptom presentation is unpredictable, with some cases appearing to fulminate within hours and other cases remaining mild for weeks. Finally, some preeclamptics progress to a convulsive phase – the disease known as eclampsia.

How is Preeclampsia diagnosed

Two blood pressure readings, taken at least six hours apart, of 140/90 mm Hg or greater, and the excretion of 300 mg or more of proteinuria in a 24-hour urine sample are the primary diagnostic requirements. Currently, many clinics are measuring the ratio of protein to creatinine in a single urine sample, using a value that predicts the total will be 300 mg or more in a day. In some instances, the disease is diagnosed without proteinuria when preeclampsia-specific signs and symptoms of other organ system involvement occur.

Signs and Symptoms of Preeclampsia

No Symptoms
Hypertension
Proteinuria
Edema (Swelling)
Sudden Weight Gain
Nausea or Vomiting
Abdominal (stomach area) and/or Shoulder Pain
Lower back pain
Headache
Changes in Vision
Hyperreflexia

Racing pulse, mental confusion, heightened sense of anxiety, shortness of breath or chest pain, sense of impending doom

 adapted from Preeclampsia Foundation

What are the risk factors for Preeclampsia

Risk factors for preeclampsia include: first pregnancy, previous history of preeclampsia, multiple gestation, preexisting hypertension, diabetes, kidney disease, or organ transplant, obesity, age over 40 or under 18 years, maternal family history of preeclampsia.  Polycystic Ovary Syndrome (PCOS); Antiphospholipid Antibody Syndrome (APS), lupus or other autoimmune disorders; and use of any Assisted Reproductive Therapy (ART).

Much of what is included in standard prenatal care was developed primarily to detect preeclampsia. This is why blood pressure and urine protein are checked at every visit and why visits come more closely together as the end of pregnancy approaches. The careful attention of care providers to these potentially invisible symptoms, and their communication of worrisome signs and symptoms to patients, has saved countless lives. Women who have been educated to know the signs and symptoms are able to practice the Preeclampsia Foundation’s motto, “Know The Symptoms. Trust Yourself.” 75% of those who knew the risks were able to take life-saving action when symptoms developed, versus 6% of those who did not know the signs and symptoms.

Pathophysiology

Placentas from preeclamptic pregnancies are characteristically shallowly implanted. During differentiation, the blastocyst will divide into an internal set of cells (the embryoblast), and an outer layer that will become the placenta (the trophoblast). When the blastocyst embeds into the decidua, the trophoblast remodels the uterine spiral arteries that supply blood to the endometrium. This remodeling activity persists into the second trimester of pregnancy. In normal pregnancies, this remodeling produces arteries that deliver appropriate blood flow to the placenta; in preeclamptic pregnancies the remodeling process is flawed.

Trophoblastic cells enter the spiral arteries and induce apoptosis, which is the initiation of cell death in the endothelial cells lining the walls of the arteries. Once the cells have died, the trophoblastic cells convert into an endothelial form and adhere to the walls of the vessels. These cells ignore maternal signaling to contract the vessel, which is why, in a normal pregnancy, these arteries are relaxed at all times, bathing the placenta in oxygen and nutrients. In preeclamptic placentas, the remodeling does not extend as far as normal, impeding appropriate nutrition and oxygenation.

One theory is that shallowly implanted placentas may not be able to transfer the total of oxygen and nutrients the fetus requires to develop ideally. The flow of blood through the spiral arteries is affected by their smaller size. Several genetic mechanisms that can cause shallow implantation have been identified with more likely to be discovered as investigation into trophoblastic cells continues. (Colucci, 2011; van Dijk, 2010)

Once fetal growth accelerates in the later trimesters of pregnancy,  the fetal demand for more oxygen than the placenta is capable of ferrying eventually leads to placental hypoxia. Hypoxia triggers the placental release of a protein called soluble fms-like tyrosine kinase (sFlt-1.) SFlt-1 binds to vascular endothelial growth factor (VEGF) and a placentally derived factor that mimics it, placental growth factor (PlGF), rendering both unavailable to the receptors they usually target. SFlt-1 levels are measurably elevated in pregnant women who go on to develop preeclampsia. (Levine 2006; Maynard 2003)

In the vasculature, VEGF shepherds repair molecules along the walls of the blood vessels, plugging the holes that appear with normal wear and tear. When free VEGF is bound by sFlt-1, it cannot do this repair work.  Because the rate at which the repair slows depends on the amount of sFlt-1 that the placenta is producing and also on the amount of VEGF a woman’s body naturally produces, the symptoms that follow this damage vary widely. The effect of reduced levels of free VEGF and PlGF is that the vasculature is unable to achieve normal vasodilation and resists signals to contract or dilate appropriately.

Another circulating antiangiogenic factor is soluble endoglin, or sEng, which binds to and disrupts the normal functioning of TGF-beta, a protein that controls proliferation, cell differentiation and other functions in most cells.. Thus sEng, too, has also been identified as a culprit in preeclampsia. Although its mechanisms are not as clearly understood as those of sFlt-1, it’s been empirically confirmed that women who develop preeclampsia at term have increasing serum levels of sEng beginning as early as gestational week 25. There are also suggestions that women are more likely to develop the dangerous variant of preeclampsia known as HELLP syndrome (Hemolysis, Elevated Liver enzymes, Low Platelets) if their levels of sEng are highly elevated relative to their sFlt-1 levels, and that they are more likely to develop severe preeclampsia when sFlt-1 levels are high relative to sEng. (Baumwell, 2007)

Depending on individual underlying susceptibilities and the ratios of antiangiogenic factors, a pregnant woman can develop the following symptoms at any rate and in any order, combination, and degree of severity, starting after midgestation and continuing for up to six weeks postpartum: hypertension, proteinuria, sudden weight gain and swelling, nausea, vomiting, upper right quadrant abdominal pain, shoulder pain that feels like a pinched nerve along the bra strap (referred from the liver), lower back pain, headache, visual disturbances, hyperreflexia, racing pulse, mental confusion, heightened sense of anxiety, shortness of breath or chest pain, sense of impending doom, abruption, IUGR, fetal distress, thrombocytopenia, either very low or conversely a large increase in urine output, seizure, pulmonary edema, liver rupture, abruption, and death.

The multi-organ nature of the syndrome means that a woman can feel fine, have hypertension and proteinuria that becomes apparent after testing, and then be admitted to the hospital with failing kidneys, liver and other organs. Or she can have a headache and begin seizing with comparatively low blood pressure and only mild proteinuria. The various presentations of preeclampsia make it challenging to consistently diagnose and manage appropriately.

The blood pressure increase indicates vascular damage that compromises the mother’s health and damages the spiral arteries which connect the placenta to the woman’s body. Women with preeclampsia also have a dysregulated metabolic response to pregnancy. (von Versen-Hoeynck, 2007)  Gestational diabetes is a risk factor for preeclampsia, and women with PE are more likely to have elevated cholesterol readings and alterations in many serum biomarkers. Placental debris from an enhanced inflammatory immune response is thought to sweep into the maternal bloodstream and trigger these metabolic responses. (Redman, 2012) Researchers are newly aware of this signaling mechanism and further research is in progress.

Treatment and Prevention

As of May 2013, the only definitive treatment for preeclampsia is delivery of the placenta. These pregnancies, whether or not they are initially low-risk, are medically complicated and are generally managed by OB-GYNS, sometimes in consult with maternal-fetal medicine specialists. Timing of delivery is one of the only tools available to manage and balance the competing interests of worsening maternal disease, a failing placenta, and a potentially premature baby. Patients are managed with close monitoring, anti-hypertensives as necessary, and sometimes steroid shots to accelerate fetal lung maturation, depending on gestational age. In severe cases, this monitoring occurs while the woman is hospitalized in a tertiary care center. Magnesium sulfate may be given to reduce the risk of seizure. In severe disease, delivery sometimes must take place regardless of gestational age to best protect both lives (even a very preterm baby can be better out than in when the placenta is failing and the mother’s liver is threatened) and is seriously considered in cases of severe preeclampsia for any worsening of symptoms after 34 weeks.

The HYPITAT trial has led to a new ACOG recommendation, to be released later this year, that any gestational hypertension (readings above 140/90 mm Hg) be induced at 37 weeks gestation. (Koopmans, 2009) The data show equally good outcomes for the neonate in either arm of the trial, and substantially reduced maternal risk of severe hypertension. 

Calcium supplementation to prevent preeclampsia has been evaluated in large randomized controlled trials (RCTs) and found to have no benefit except perhaps in populations with very low dietary intake. Antioxidant supplementation – specifically vitamins C and E, also evaluated in large RCTs, has shown no benefit. Supplemental baby aspirin showed no benefit or harm in two large RCTs, but meta-analysis showed a potential benefit to an as-yet-unidentified high-risk population when begun in the first trimester. The older therapies of dietary salt restriction, diuretics, and bed rest have not been shown to have benefits and may cause harm so are not recommended.

Risk of Cardiovascular Disease

In addition to being at higher risk of preeclampsia in any subsequent pregnancies, women with a history of preeclampsia are at roughly double the risk of developing heart disease or stroke over the five to fifteen years following delivery. Many women develop chronic hypertension postpartum. There are risk factors common to both preeclampsia and heart disease, and there is also evidence that preeclampsia can cause damage to the heart. 

Lifestyle changes are known to lower risk of heart disease, so women with a history are recommended to stop smoking (or never start), eat a heart-healthy diet, get regular exercise, and maintain a normal BMI. Because preeclampsia unmasks a higher risk, proactively consulting her physician and preferentially a general internist or cardiologist to discuss heart health postpartum can also help to monitor for the chance that heart disease will develop.

Lowering the Risk

Although there are no known therapies at this point, there are ways to reduce the risk of preeclampsia to mother and baby. Pre-conception or inter-conception care is gaining increasing value as women can be assessed and counseled to begin a pregnancy in the best possible health. Regular prenatal care, with close monitoring of symptoms, will detect the onset of hypertension in many women. For those whose disease progresses rapidly between appointments, knowledge of the signs and symptoms of the condition is the best protection. To this end, the Preeclampsia Foundation provides evidence-based patient education materials to care providers and encourages women to contact their care providers to report any headache, nausea, elevation in hypertension, changes in swelling or urine output, visual disturbances (like sparkles and flashing lights,) and pain in the upper right of the abdomen or along the bra strap. Being informed and closely monitored saves lives.

References and Recommended Reading

Baumwell, S., & Karumanchi, S. A. (2007). Pre-eclampsia: clinical manifestations and molecular mechanismsNephron Clinical Practice106(2), c72-c81.

Colucci, F., Boulenouar, S., Kieckbusch, J., & Moffett, A. (2011). How does variability of immune system genes affect placentation?. Placenta32(8), 539-545.

Garovic, V. D., Bailey, K. R., Boerwinkle, E., Hunt, S. C., Weder, A. B., Curb, D., … & Turner, S. T. (2010). Hypertension in pregnancy as a risk factor for cardiovascular disease later in lifeJournal of hypertension28(4), 826.

Koopmans CM, Bijlenga D, Groen H, Vijgen SM, Aarnoudse JG, Bekedam DJ, van den Berg PP, de Boer K, Burggraaff JM, Bloemenkamp KW, Drogtrop AP, Franx A, de Groot CJ, Huisjes AJ, Kwee A, van Loon AJ, Lub A, Papatsonis DN, van der Post JA, Roumen FJ, Scheepers HC, Willekes C, Mol BW, van Pampus MG; HYPITAT study group. (2009) Induction of labour versus expectant monitoring for gestational hypertension or mild pre-eclampsia after 36 weeks’ gestation (HYPITAT): a multicentre, open-label randomised controlled trialLancet. 374(9694):979-88

Levine, R. J., Lam, C., Qian, C., Yu, K. F., Maynard, S. E., Sachs, B. P., … & Karumanchi, S. A. (2006). Soluble endoglin and other circulating antiangiogenic factors in preeclampsiaNew England Journal of Medicine355(10), 992-1005.

Maynard, S. E., Min, J. Y., Merchan, J., Lim, K. H., Li, J., Mondal, S., … & Karumanchi, S. A. (2003). Excess placental soluble fms-like tyrosine kinase 1 (sFlt1) may contribute to endothelial dysfunction, hypertension, and proteinuria in preeclampsiaJournal of Clinical Investigation111(5), 649-658.

Powers RW, Jeyabalan A, Clifton RG, Van Dorsten P, Hauth JC, et al. (2010) Soluble fms-Like Tyrosine Kinase 1 (sFlt1), Endoglin and Placental Growth Factor (PlGF) in Preeclampsia among High Risk Pregnancies. PLoS ONE 5(10): e13263. doi:10.1371/journal.pone.0013263

Redman, C. W. G., Tannetta, D. S., Dragovic, R. A., Gardiner, C., Southcombe, J. H., Collett, G. P., & Sargent, I. L. (2012). Review: Does size matter? Placental debris and the pathophysiology of pre-eclampsiaPlacenta,33, S48-S54.

Turner, J. A. (2010). Diagnosis and management of pre-eclampsia: an update.International journal of women’s health2, 327.

van Dijk, M., & Oudejans, C. (2010). Stox1: key player in trophoblast dysfunction underlying early onset preeclampsia with growth retardation.Journal of pregnancy2011.

von Versen-Hoeynck, F. M., & Powers, R. W. (2007). Maternal-fetal metabolism in normal pregnancy and preeclampsiaFront Biosci12, 2457-2470. 

Warning, J. C., McCracken, S. A., & Morris, J. M. (2011). A balancing act: mechanisms by which the fetus avoids rejection by the maternal immune systemReproduction141(6), 715-724.

World Health Organization. (2011). WHO recommendations for prevention and treatment of pre-eclampsia and eclampsia. Geneve: WHO.

About Caryn Rogers

A native of Tempe, Arizona, Ms. Rogers is a graduate of Arizona State University. A freelance science writer and editor for medical nonprofits, she has been the senior science writer for the Preeclampsia Foundation since 2006. She lives with her family in Mt. Lebanon, PA, where she also plays the violin. Ms. Rogers can be contacted through the Preeclampsia Foundation or via email

 

 

 

Childbirth Education, Evidence Based Medicine, Maternity Care, New Research, News about Pregnancy, Pregnancy Complications, Research, Uncategorized , , , , , , , ,

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 , , , , , , , , , , , , ,