May is Preeclampsia Awareness Month, as well as being the month where all of us celebrate the many maternal figures that have positively impacted our lives. As many of you can attest, motherhood is about more than a single day's recognition for the work that you lovingly (or at times begrudgingly!) do year-round for your family.

The same could be said about Preeclampsia Awareness month, which has always been about more than raising a banner or hosting a single event. Preeclampsia Awareness month is about taking action on behalf of a greater family: the global community of women and their families. For the Preeclampsia Foundation, May is not a culmination, but a beginning. It is a call to ACTION.

As such, May's newsletter is a call-to-action to make preeclampsia not just "that pregnancy thing," but a word that reminds people of the 10,000,000 women across the globe that are impacted, sometimes devastatingly, by preeclamptic pregnancies each year.

Read Janel Kovarik's account of sharing her preeclampsia experience with three generations of women, or find out how Promise Walks are delivering local awareness. Discover how healthcare providers are joining our call-to-action to make a difference.

It is also with sadness that we mourn the loss of a great preeclampsia researcher, Dr. Richard Levine, whose contributions to the understanding of the pathophysiology of preeclampsia will continue to live on through his research projects.

We also encourage you to take part in a variety of awareness events this month, including social media events with the March of Dimes, our blog button advertising campaign and a meaningful public art display that could come to your community.

Happy Mother's Day to all!

 

 

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Perinatal Outreach Educator Networks (POENs) are generally funded by individual states to provide perinatal (the care offered to a mother and child just before and just after birth) medical education to health care providers in the region, enhancing the quality of care for mothers and infants and reducing morbidity and mortality. Specialists share their experience and knowledge with other physicians and community hospitals across regions by offering or facilitating programs such as physician and nurse consultation services, continuing education for health care professionals, emergency medical transport for referring hospitals within the region, consultation and technical assistance on emerging perinatal issues, and sometimes even lending libraries.

For example, in Illinois, there are 10 perinatal centers designated by the state. Rush Hospital in Chicago is home to the the largest network, involving 18 hospitals delivering more than 30,000 infants. The Rush Perinatal Center maintains a 24-hour hotline to facilitate the transfer of high-risk mothers and infants. Through the perinatal center, Rush offers an extensive series of classes for physicians, nurses and other health professionals. Other centers are housed out of the Other centers are housed out of the University of Chicago Perinatal Center; John H. Stroeger, Jr. Hospital of Cook County Perinatal Center; Northwestern/Childrens/Evanston Perinatal Center; University of Illinois /Christ Perinatal Center; Loyola University Perinatal Center; Northwest Illinois Perinatal Center - Rockford Memorial Hospital; North Central Perinatal Center - St. Francis Hospital; South Central Illinois Perinatal Center - St. John’s Hospital; Southern Illinois Perinatal Network - SSM Cardinal Glennon Children's Medical Center and SSM St. Mary’s Health Center.

These regional networks have been widely credited as one of the principle reasons for the rapid decline in neonatal mortality rates in the last several decades. Although, the other principal reason is the introduction in the late 1980s of surfactant replacement therapy, which reduced the incidence of lung disease in newborns.

In Illinois, especially the Chicago area, Preeclampsia Foundation volunteers have been making presentations about the Foundation to various perinatal networks. These volunteers share their stories and information about resources available through the Foundation. They also ask for input on what additional materials would be helpful. From these discussions came the development of a unique HELLP syndrome seminar involving a point-counterpoint type of presentation contrasting the input of Dr. Judith Hibbard of the University of Illinois-Chicago against that of HELLP survivors' real world experiences. As a result of these presentations, orders for the Foundation's patient education materials have increased tremendously. These interactions have also provided good opportunities for raising awareness about upcoming Promise Walks for Preeclampsia™.

Debbie Schy from Advocate Lutheran General Hospital is one of the current co-chairs of the Perinatal Outreach Educators of Illinois and has attended presentations from Foundation volunteers. "We're so appreciative of the volunteers from the Foundation," said Schy. "They are a phenomenal group and we are lucky to have you here."

The Foundation is working with local volunteers to take the success we've enjoyed in Illinois to other major markets across the nation.

 

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What was your experience with preeclampsia?

In my first pregnancy I wasn't worried about PE at all; everything was going smoothly until 31 weeks when, at our last childbirth class on a tour of the hospital's Labor & Delivery (L&D) ward, I started having painful contractions. We ended up calling my OB from the hospital parking lot and she told us to go back up to L&D where they hooked me up and determined - yes - these were real contractions & I was starting to dilate. Many hours of monitoring and couple shots of terbulaline later they sent me home. I ended up at my 37 week appointment, being sent over to L&D for an induction because of preeclampsia.

How aware were you about preeclampsia before/during your pregnancy?

I'd never really heard of preeclampsia before my first pregnancy. During my pregnancy as I started having high BP sometime around 34 weeks it got mentioned and I knew there were some things to watch for and to call in about. But no one ever mentioned that upper right quadrant pain was not normal.

My 2nd pregnancy was pretty uneventful, and even with mild high blood pressure, I made it to a planned induction at 38 weeks. I wasn't planning a 3rd pregnancy but a couple weeks after our 2nd daughter turned 2, we found out SURPRISE, I was pregnant! I was kind of panicked about a pregnancy starting with chronic hypertension, so I went looking for information and stumbled across the Preeclampsia Foundation forums.

Unfortunately, even on BP meds, my BP kept rising. Around 32 weeks, I started getting headaches and at 34 weeks I made my 1st trip to L&D because of it. They monitored me for a while, gave me pain medication & said it looked like things were heading downhill. It was Christmas and I desperately wanted things to be "normal" and be at home with our two other girls who were 4 and 2 so I took Darvocet to deal with the persistent headache and stayed home. In hindsight, this was a totally stupid plan!! I just thought if I could hold out until the 26th everything would be ok.

On Dec. 26, we went to my 36 week appointment and my OB took one look at me and sent me straight over to L&D. Our baby was born just after midnight early on the 27th. Her lungs were mature & she never needed any help breathing. I was discharged with really high BP (even on my BP meds) with the nurses telling me it was just because I was stressed about leaving my baby there. I ended up going back to the ER the next night with a headache worse than anything I'd had while pregnant (which I didn't think was possible!) and really high BP. We spent all night there, I got IV BP meds and morphine shots (which just took the edge off the pain) and went home in the morning with a prescription for an additional BP med. Over 4 years later, I still take a high dose of 2 BP meds. Last year I was diagnosed with Rheumatoid Arthritis so it's possible that was an underlying factor in my having PE 3 times. But our 3 girls are healthy and for that I am truly grateful.

Why do you volunteer for the Preeclampsia Foundation?

I volunteer because the Forums were my lifeline for information, support and sanity during my 3rd PE pregnancy. I know how much they helped me and I see how much we help families every day.

What are your goals and dreams for your involvement with the Foundation?

We live in Oklahoma City and I am very happy that we are getting our own Promise Walk this year! We've done the walk in the Dallas-Ft. Worth area for the past 2 years and plan to do it again in May. My mom and dad donate and come to walk with us because they are so grateful to the PF for what they've done for our family. I can only hope that our fundraising efforts can find a cure.

What has been your most gratifying moment as a Foundation volunteer?

There have been several times as a forum moderator that I have checked for updates first thing in the morning, or stayed up late hoping for an update from one of our posters going through a difficult PE pregnancy. I worry about them like they are family. But it makes me realize how much good we're doing when a member says that she credits us (the forum and the Foundation) for saving her life and/or the life of her baby with the information and support we gave her.

 

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Posted on in Research

At the Society for Gynecologic Investigation (SGI) Annual Scientific Meeting in San Diego, Calif., in March, the Preeclampsia Foundation, in collaboration with lead authors Dr. Ineke Postma, Dr. Gerda Zeeman, Dr H. Groen of the University Medical Center Groningen, the Netherlands, and Dr. Thomas Easterling of the University of Washington, presented a poster on cognition, quality of life and social functioning after a hypertensive pregnancy. Many formerly preeclamptic women report difficulties with memory or word choice postpartum, but so do many women with normal pregnancy courses. The unanswered question: what is the likelihood that preeclampsia causes brain changes independent of pregnancy itself? If there are preeclampsia-specific changes, can those be separated from the trauma of a medical crisis?

Enrolling more than 1,000 participants in this study, the Preeclampsia Foundation's survey queried women with (cases) and without (controls) a history of hypertension in pregnancy. Participants anonymously completed an online survey assessing their cognitive functions, their quality of life, and their social functioning. The study found that the population of women with a history of preeclampsia scored statistically significantly lower on all three assessments. Although there was significant overlap between the populations, the average score for the populations as a whole was shifted - which suggests that there is actually real change triggered by preeclampsia - and that shift persisted after the populations were adjusted for things that could potentially affect the scores, like current use of blood pressure medication. Seizure was particularly strongly correlated with long-term cognitive difficulty. The study will also be presented in July at the International Society for the Study of Hypertension in Pregnancy (ISSHP) World Congress in Geneva, Switzerland.

"More and more information is emerging suggesting that preeclampsia is a condition with long term implications," explained the lead author on the study, Dr. Ineke Postma. "Preeclampsia can be a very emotional and sometimes traumatizing experience with some women complaining about ongoing memory or attention-deficit problems. In order to provide adequate long term support to preeclampsia survivors, we need to identify the actual scope of the problem. This study is an important step in that direction."

Although this study used subjective neurocognitive testing (that is, the questions and test were not administered by a separate researcher, but self-reported), the study has some potential weaknesses, but it is an important step to investigating this question: does preeclampsia result in some level of permanent damage to your brain?

These kinds of research collaborations are but one way we catalyze research. See our research section for more information about our research initiatives.

 

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By Jill Siegel ~ As Father's Day approaches, I feel honored to be able to give a very personal shout-out in this newsletter to my husband and our daughter's father, Jeff Siegel. There are so many Preeclampsia Foundation fathers, husbands, and partners who are often 'silent partners' in our volunteer efforts. Any one of them - pick a name: Dan Sloan, Tim Purnell, Todd Beadle, Demetri Tsigas, Jason Drews, Kurt Detweiler, Jay Weeks, Tim Aiken... and the list could go on and on - could be profiled here. For one, I have to laugh when I recall Tim Aiken's help at the 2011 Chicago Promise Walk and 5K Run. Due to a misunderstanding with one of our vendors, he and I found ourselves driving in a car along a bike- and pedestrian-only path in order to mark our course!

I am sure all the many 'silent partners,' like Jeff, have schlepped more than a few tables to a Walk, occupied a child or overlooked household chores so their partner could take another volunteer conference call, and leveraged their own personal and professional relationships to garner donations to or awareness of the Preeclampsia Foundation.

Jeff has certainly done those things - not always getting a timely thank you from me. When I slow down long enough and pause to thank him, I am reminded of how lucky I am to have him beside me - and how lucky I was back in 2004 when we experienced our preeclampsia nightmare. Man, what he has been through!

Like many 'preeclampsia dads,' within a matter of 24 hours, he went from being a first-time father to potentially becoming a widower and single dad to our 10-week premature baby. Fortunately, baby Brooklyn would be home and I would be out of critical condition within a couple months, so he could finally return to work- but his evenings consisted of visiting me in the hospital where he had to repeatedly convince me how lucky we were (my weakened, stroke-impaired body was fairly skeptical!).

Jeff has been my co-volunteer for the Foundation since 2007 and for the last two years, he has taken on the role of Technology Coordinator for all of the Promise Walks. That role has nothing to do with my own volunteer work for the Foundation (although I do take full advantage of it for our local Walk efforts!). He might say his job is only to "put pins on the Promise Walk map," but I have seen evidence of a much richer involvement. He has provided tech support to Walk Coordinators, interfaced with contracted web developer regarding potential improvements to the website, helped update content on Walk webpages, and as he says, "uploaded more than 100 logos onto the Walk website."

Jeff has utilized his technology background and social media interests superbly in supporting our efforts in Chicago - creating a Chicago Preeclampsia Awareness Facebook page before I was even on Facebook personally, setting up a Linked In page, and tweeting during our Walk/Run. I am always momentarily stunned and touched when my Facebook feed includes a post about preeclampsia that he has made completely on his own - no prodding or suggesting from the wife! It is at these times that I am reminded of one of the main reasons Jeff says he helps out: "it is important to you, so it is important to me."

He connects with the Foundation's mission because our family was touched dramatically by preeclampsia, but also because he wants to support efforts to fight the disease and create awareness, saying, "I have been impressed by the level of passion and commitment that people have toward the Foundation and it is something with which I want to be associated."

As our Foundation and volunteers are now coming through the busiest part of the Walk season - the most successful in the Foundation's history - there are so many people to thank; but please don't forget about the many of whom are those 'silent partners' and supporters who deserve a huge part of the credit. Those are the people who appreciate the passion we all share and remind us how lucky we are when we, ourselves, are not so convinced.

So on this Father's Day, I say, thank you, Jeff; and thank you to all the other "Jeff"s we know are out there!

 

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Last week, the Supreme Court upheld the constitutionality of The Patient Protection and Affordable Care Act, otherwise known as the "health reform law." This means that implementation of this landmark legislation can continue to move forward. However, the law continues to be the subject of debate through this year's presidential and congressional election cycle, and depending on the election results could be altered by Congress and the White House in the future. As it currently stands, the law directly benefits childbearing women and newborns by:

  • prohibiting the use of pregnancy as a preexisting condition by health insurance providers;
  • widening access to certified nurse-midwives by eliminating inequities in how they are reimbursed under Medicare;
  • paying for home visits by nurses for at-risk families during or after pregnancy;
  • expanding access to primary maternity care by improving Medicaid coverage of freestanding birth centers;
  • expanding access to Medicaid and affordable private health insurance for women of childbearing age who are now uninsured or under-insured;
  • requiring maternal health coverage as an essential health benefit to be provided by individual and small health plans offered within state health care exchanges.*

As the election nears, we will continue to keep you updated on issues related to maternal health that are affected by the health reform law.

*Some information above provided by Childbirth Connection

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While the 2012 campaign cycle has been drawn out for months, primary season is beginning to wind down, and the choices of candidates for the general election in November 2012 have become more apparent. Voting is an important civic responsibility, and making an informed choice when voting is essential. Below are some tips to help you research candidates' positions on issues that are important to you.

  1. Decide what issues and qualities are most important to you. Is it health care, the economy, or foreign policy? Think about what personal qualities you think are important: past experience, previous leadership or political positions, or personality.
  2. Visit the candidates' websites - either their official website if they already hold office or their campaign website - to find out their stances. Candidates generally have an "issues" section where they address major policy topics.
    1. Presidential candidate sites: http://www.barackobama.com and http://www.mittromney.com.
    2. Congressional candidate sites: www.house.gov and www.senate.gov. To find the Representative in your congressional district, enter your zip code. To find the Senators in your state, look by state. The Representatives and Senators who are running for re-election will also have a separate campaign website, so be certain to look for those sites, as well.
    3. Other candidate sites: To find out who is challenging a current Member of Congress, visit a site like the League of Women Voter's Vote411 site. Vote411 allows you to enter your address in order to identify the candidates who are running in your state or district.
    4. State Representative candidate sites: Look up the website for your state's State Board of Elections for links to local candidates.
  3. Look up a current Member of Congress' voting record. Legislation the Representatives and Senators have introduced, formal statements they have made, and how they have previously voted on issues can be found by visiting www.thomas.gov.
  4. Look up official campaign websites. Whether a standing Member of Congress or a candidate for congressional office, everyone has a website, and those websites include a biographical section, which can provide information on the candidates' previous experience and positions on the issues.
  5. Pay attention to who has endorsed the candidates and where their campaign funding is coming from.
  6. Carefully consider what others - opposing candidates, the news, even your friends and relatives - say about the candidate. Be on the lookout for any bias or "spin" and be wary of any TV ad tactics appealing to emotions. Look for any buried messages about issues beneath the attacks.
  7. Finally, evaluate and match your findings with the issues and qualities you outlined as important to you. In some cases, a clear choice that matches your criteria may be evident early on in your research. Other times, a distinction between candidates or someone who obviously identifies with your views may not be as clear.
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Thirty-five volunteer-driven walks took place across the country, twelve of those in new cities, and the national fundraising goal of $400,000 was surpassed before the last walk took place.

"There were so many highlights and accomplishments this year that it's hard to know where to start!" said 2012 National Promise Walk Coordinator Becky Sloan. "We increased national awareness, especially through new media spots, proclamations and local elected officials who gave their time to acknowledge Preeclampsia Awareness Month at many walks. We also saw an overwhelming dedication of new and continuing volunteers that came out in droves to help our coordinators."

Many walks exceeded their fundraising goals, including Boston, who set a goal of $16,775 and raised an astounding $29,316; and Oklahoma City, who set a goal of $8,400 and raised an amazing $15,680. Other cities that far exceeded their goals included Leigh Valley/Easton who exceeded their goal by $3,000; San Diego, who exceeded their goal by $4,000; Portland, who exceeded their goal by $4,000, and St. Louis, who exceeded their goal by $3,000.

Aside from the monetary goal, volunteers have done a fantastic job raising awareness through advocacy and media outreach. Walk coordinators secured more than 30 state and local proclamations or state resolutions declaring May as Preeclampsia Awareness Month. Significant media coverage - TV, radio and print, plus Facebook and Twitter - brought preeclampsia awareness and key information to the public and targeted audiences.

This was also the first year that the Foundation utilized a system of Regional Promise Walk Coaches: experienced walk volunteers who helped provide guidance and support for walks across specific geographic regions.

"We're so excited about the success and influence our region's walks have had this year," commented Mid-Atlantic Regional Coach Dawn Detweiler. "With three new walks and two continuing walks in our area, our increased walker participation and sponsorship commitments have made a significant difference locally and in supporting the national drive."

"Successful regional efforts will play an increasingly important role in the growth of The Promise Walk for Preeclampsia," explained executive director Eleni Tsigas.

Kim Timer, coordinator of the inaugural Erie, Pennsylvania, walk stated, "It was amazing to see the support we received from the community and the amount of people who shared their own preeclampsia stories after we announced the Erie walk."

There is still time to donate to your favorite walk! The Promise Walk season ends on August 31, so donate today at www.promisewalk.org.

 

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This month, we highlight the volunteer efforts of Stacy Vallely, whose fundraising team "Ty's Team" raised an astonishing $10,300 for the Boston Promise Walk! Stacy raised $5850 herself, making her the highest individual fundraiser of all the Promise Walk participants. We asked Stacy a couple questions about her involvement with the foundation.

1. What was your experience with preeclampsia?

I started to swell pretty early on. I remember thinking that I couldn't believe that I had to take my rings off before the 3rd trimester. Then when I started to feel funny. I called my midwife and expressed concerns about preeclampsia because of the swelling. She asked if I had any headaches? No. Any vision changes? No. She told me that they don't usually worry about preeclampsia until 36 weeks and I was just 26 weeks. My blood pressure at our last appointment was fine, so I should "put my feet up and I will see her in a little over a week". I didn't make it to that appointment. At 27 weeks, 6 days, I had such bad epigastric pain that I, the one who hates the doctor and hospitals, literally pulled my husband out of the shower and made him take me to the closest hospital, not the one I wanted to deliver at. I was wheeled immediately to labor and delivery. My blood pressure was taken... 222/165. Moments from having a stroke, my room filled with doctors, nurses, neonatologists and staff. I was put on the magnesium to prevent a seizure. They got a transport ready to take me to the city hospital. I was confused and scared. I lasted 5 days at the city hospital with my blood pressure going up and down and up and down. Finally, my son's tracings started to look not so great. So at 28 weeks, 4 days, I got prepped for an emergency c-section. The spinal didn't work and I was placed under general anesthesia. So much for my non-medicated home water birth. My son, Tyler, fought hard and struggled through the next 82 days in the NICU. He came home one day after his due date. Then was readmitted after 11 days for severe reflux for another 4 days. As for myself, I spent another 5 days in the hospital trying to manage my blood pressure. I was discharged, only to be readmitted for another 4 days. I visited the ER a few more times after that and stayed on my medication for almost a whole year after my son's birth. My son is now 16 months old (13 months adjusted) and is just amazing. The light and love of my life. He makes me laugh and smile every day.

2. How aware were you about preeclampsia before/during your pregnancy?

I had never heard of preeclampsia before my pregnancy. I had never heard of preeclampsia at any point during my pregnancy from my doctors and midwives. It was my sister, who saw my swelling, that warned me about it.

3. Why do you volunteer for the Preeclampsia Foundation? What volunteer positions have you held?

I volunteer for the Foundation because I don't ever want a woman, child, or family to suffer because of preeclampsia. I lost my pregnancy, my dream delivery, nearly my life, and nearly my son's life. My husband and I endured the NICU and all that worry, trauma, stress, and sadness that comes with it. All of this because of preeclampsia. The first year I found out about the walk, I offered some simple services to the walk coordinator like donations for the raffle and watermelon to eat. The second year, I took on the role of the Boston walk coordinator.

4. What are your goals and dreams for your involvement with the Foundation?

I don't want anyone to ever have to go through what I, and many others who have had worse experiences, went through because of this disease. I want to find a way to prevent this disease, or find a cause, or find a cure other than delivering the baby.

5. What has been your most gratifying moment as a Foundation volunteer?

The most gratifying moment personally was being the highest fundraising team in the nation. My friends and family have been incredibly supportive. Sometimes you get so swept up in moments and you forget how much illnesses affect people other than yourself. My family was scared and so were my friends. Yet, they visited and held Tyler. They brought food, cooked food, drove me to the hospital to see him when I couldn't drive. They washed bottles so that I could pump and rest without having to worry about it. They texted me when it was time to take my medicine so I wouldn't forget. The cleaned my house and took care of our dogs. My co-workers kept me up to date but didn't bother me. They filled in when they could. I was constantly surrounded by caring people filled with support and love. That shows even more when you realize that because of them, my team was the highest fundraising team in the nation. I just want to say a big THANK YOU to everyone who helped us get there and for all the love and support that people have shown over the past 16 months.

 

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What was your experience with preeclampsia?

I had preeclampsia with both of my pregnancies. With my first child, I was not made aware of the symptoms of this condition, so when I started having side pains, I just thought I had a cramp, nothing serious. I had gained a significant amount of weight, but had no basis of comparison, so I believed it to be just the nature of being pregnant. I went from 115 lbs to 180 lbs and assumed that was normal. I was swollen, short of breath, and generally unhappy. By the time the high blood pressure became a threat, it became significantly high. Because my proteins showed up during a routine visit and at about 28 weeks, I was put on bed rest, and was administered Labetalol to manage my blood pressure. After I gave birth at 35 weeks with my eldest daughter, I was told I had been preeclamptic but that it was "not a big deal." I was reassured it does not necessarily happen with every pregnancy, so I was told, for my next baby... "Let's plan to have a drama-free pregnancy."

About a month or two after the birth of my first child I saw an episode on TLC of a woman who lost her baby due to preeclampsia and I thought... "Hey, that is what I had!" I had no idea what it was and so after I watched the show, I researched the condition. The next day, I called my Ob/Gyn and I asked her "Could my baby have died from what I had? " I was concerned because she had been so relaxed about it. She briefly explained the condition to me but again stated I just "needed to relax and watch my diet and I would be fine for the next baby."

A year later, I got pregnant with my second child. At 12 weeks, I looked 28 weeks pregnant due to my size. My signs and symptoms the second time were worse and more pronounced. The doctor prescribed 1000 mgs of Labetalol and 60 mgs of Procardia with my blood pressure still lingering at 210/120. No matter what I did, I couldn't relax because I felt like I had an elephant sitting on my chest and I couldn't breathe. I was heavily retaining water. My nose was enlarged, my lips had swollen, my feet were swollen, I could hardly see out my eyes. I had migraines that were so severe that I couldn't even walk. I woke up every morning and wondered if I would make it to the next day. I felt completely and utterly tortured. I weighed over 185 lbs at 28 weeks pregnant with a starting weight of 120. I would call my Ob's office and cry and tell them I couldn't breathe and I felt like someone was suffocating me and they would tell me to go lay down and rest. I felt that I had no voice for my condition.

At 28 weeks I went into the hospital when my proteins were elevated and shortly thereafter gave birth to my second daughter, Sophia. I was in the hospital for a week after I gave birth and Sophia stayed in the NICU for 8 weeks, as she was born at 3 lbs, but had dropped to 2 lbs 10 oz and we couldn't keep weight on her.

I ended up leaving my gynecology practice 6 weeks postpartum after having been a patient with them since I was 18 years old. I was so upset because I felt that I had had no support during this time. At my 3-4 week post check up I told them that I was blacking out and had fainted the night before. I was certain that I had a TIA, based on the symptoms that were confirmed by several knowledgeable people in the cardiology field. I told my doctors this... And nobody did anything about it. Later, my husband told me that I should ask my Ob/Gyn about the risk of heart disease due to preeclampsia, and I was shocked that I was the one who had to address this information.

Why do you volunteer for the Preeclampsia Foundation? What positions have you held?

I volunteer for the Preeclampsia Foundation because I believe in my heart that this is a serious condition that needs to be addressed. I was shocked when I met other volunteers how many had shockingly similar stories. When I looked at the statistics, I learned over 500,000 babies and 76,000 mothers die each year worldwide. At this moment, I knew this was a non profit that I wanted to dedicate time to helping out. I am very passionate about the organization and what it represents. This past year I was the keynote speaker in Denver at the Preeclampsia Promise Walk and was honored to share my stories with other survivors in Denver. I decided to run for the title of Mrs. Colorado International after winning the state title in March of this year, to see if I could help make a difference state wide, nationally, and if I won the title of Mrs. International, I could change lives across the globe.

What are your goals and dreams for your involvement with the foundation?

My international pageant was held July 20, 2012 in Chicago and I am proud to say that although I did not win the International title, it was such an honor to make it to the Top 10. Once I made the Top 15, we were asked individually to speak to the thousands of spectators about our platform. After I spoke about preeclampsia, I was asked questions about my goals for the Preeclampsia Foundation if I won Mrs. International. I explained how I have been working on signs and symptoms awareness posters that I think would be very beneficial if these were placed in every gynecology office across the nation. That way, on every prenatal visit, when that patient is sitting in her doctor's office exam room waiting for her doctor to come in, she may read this information and know what preeclampsia is. It is my goal that we do not have to rely on the doctor to tell every patient about this disease. They can learn it for themselves and when or if those symptoms arise, they will know what to look for and speak to their physician about it. Education is key: and knowing your body. If something doesn't seem right, then it probably isn't.

What has been your most gratifying moment as a volunteer?

My most gratifying moment this year was when I made it past the Top 15 in the pageant, stood there and spoke about preeclampsia to educate thousands about the disease. You never know who in that audience I might have been affected in a way that could save a person's life. If I had not stepped outside of my comfort zone by entering the pageant circuit, I never would have had this impact. When I made it to the Top 10 after my statement, I knew I had delivered the information effectively and I cried so hard I had a hard time walking off the stage to stand in my spot in front of the crowd. Through my tears I looked over to the judges and blew them a kiss and said "Thank you." I was up there representing myself and my daughters, and I stood for the thousands of women who have lost their babies or lives from this serious illness. I am a better person for having had that opportunity.

My goals now still have not changed even though I did not take home the International crown. I am still Melissa Heideman, a survivor, and I plan to tell my story to anybody who will listen. I have a jewelry designer here in Denver who is gracious enough to have offered me a jewelry show with 100% of the proceeds to the Preeclampsia Foundation. Today I learned that a local radio station wants to do a fundraiser for the foundation and feature me on the show. I also have a local boutique who has offered me the opportunity to have a private party, invite friends, and 10% of proceeds will go to the Foundation. I plan, beauty queen or not, to help the Foundation for as long as I am living. It has been a complete privilege and honor to represent the foundation. Lastly, I plan to help the Preeclampsia Foundation organize the 3rd annual Promise Walk in Denver. Please check out my website at www.melissaheideman.com.

 

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Posted on in Research

Every two years, the International Society for the Study of Hypertension in Pregnancy (ISSHP) World Congress brings together the top researchers and clinicians in the field of hypertension in pregnancy to share innovations and encourage collaborations in research and clinical practice. As in year's past, the Preeclampsia Foundation participated in the 2012 meeting held July 9-12 in Geneva, Switzerland.

Like the current Olympics which inspire us to "Citius, Altius, Fortius" (Latin for "faster, higher, stronger"), the World Congress inspires participants to demonstrate new found knowledge and skills, and to push each other forward. In the enthusiasm of science-swapping and networking at a meeting like ISSHP, sometimes the larger purpose of our endeavors - saving lives and improving health outcomes of mothers and babies worldwide - may be forgotten by those racing from one intriguing lecture to the next.

That's where the Preeclampsia Foundation comes in. It is a testament to the extraordinary outreach of our mission that not only are we widely recognized as a key patient resource by individual health care providers, but are sought out by industry leaders as THE voice to provide a reminder of the patient perspective amongst the plethora of science and research. Our impact can be summarized in that one word: "voice." By joining our members' collective experiences along with the experience of wonderful new friends from European patient advocacy groups, we have become a powerful entity for change. A voice that is not only heard, but valued.

The Foundation's efforts to improve health care practices and catalyze research were also felt at ISSHP. Two investigators presented research findings developed through our collaboration in the Brain Study- and for many of our readers - it was your participation in this study that provided such meaningful data. In one oral presentation, findings suggested an association between history of preeclampsia and post-traumatic stress disorder. In the other, findings suggested an increase in neurocognitive disorders among women with history of preeclampsia. Both studies are being developed for publication and will be promoted via this newsletter when they're published. Both studies were exceedingly well received, with other researchers encouraging us to conduct further studies on long-term patient impact to improve clinical care.

We also presented two research travel grants, which helped promising young investigators attend this important meeting, interact with seasoned researchers, and become committed members of the hypertension in pregnancy community.

Every day, our website and social media platforms receive thousands of visitors from more than 200 countries around the world, so it was particularly wonderful to meet global health care providers who interact with those patients and who themselves use our website regularly. Unfortunately, we are sometimes the only source for additional patient support and education. So though no one received any laurel wreaths or gold medals during the Foundation's international journey, the patients are the real victors through the furthering of global preeclampsia research.

 

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A recent Preeclampsia Foundation survey reveals that most women feel that books that provide complete and accurate information about preeclampsia would help them approach their pregnancies as empowered patients. The survey, conducted as a follow-up to the May release of the Preeclampsia Foundation's Report on the Top 10 Pregnancy Books, asked women about the pregnancy books they used during their pregnancies and about their feelings regarding the preeclampsia information contained in those books.

All respondents were entered into a contest to receive a signed copy of one of the top 3 books and a Preeclampsia Foundation gift basket. Congratulations go to Melissa S., Teri P., and Laura R. for winning the random drawing!

Not surprisingly, the majority of respondents (69%) reported that they relied on the bestselling What to Expect When You're Expecting by Heidi Murkoff and Sharon Mazel for pregnancy information, which ranked 10th on the Foundation's report. The next highest read book at only 10% was Your Pregnancy and Childbirth: Month-to-Month (5th Edition) by the American College of Obstetricians and Gynecologists.

None of the top 10 books in the Foundation's Report scored above an 8 (on a 10 point scale) in all of the judged criteria: depth of coverage, placement of coverage, clarity and accuracy, description of symptoms, and postpartum concerns. Few of the books reviewed provided adequate information on postpartum preeclampsia, with many claiming that the process of birth is in itself the "cure" for preeclampsia.

Survey respondents were also asked to rate their feelings and actions should a pregnancy guide meet all of the Foundation's criteria in regards to preeclampsia. Only 19% of all respondents claimed that they would feel over-anxious or nervous if a book met all of the Preeclampsia Foundation criteria. The remaining 81% expressed that they would feel at least some level of empowerment and a full 39% indicated that they would feel "confident and empowered" if given information about preeclampsia and related conditions.

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By Dr. Anne Wallis ~ Who remembers the first season ER episode "Love's Labours Lost"? The answer: pretty much anyone who ever watched ER! In the episode, a pregnant woman presents to the emergency room with a complaint of bladder problems, has a seizure and later dies. This was my first exposure to the hypertensive disorders of pregnancy. Eclampsia is, thankfully, rare, but it carries a high case fatality rate for the mother and/or the infant. Gestational hypertension and preeclampsia are far more common, affecting between 5% and 8% of all pregnancies in the US. Moreover, these conditions are on the rise and globally, these conditions are a leading cause of maternal and infant illness and death.

Obstetric providers are acutely aware of the dangers of preeclampsia because of its potential severity and rapidity of onset and progression, making high-quality prenatal care and patient education essential.

Unfortunately for patients, preeclampsia education is not a required component of prenatal care visits, though the Preeclampsia Foundation is working hard to change this. Perinatal practice guidelines currently published by the American Academy of Pediatrics (AAP) and the American College of Obstetricians and Gynecologists (ACOG) provide no guidance to providers regarding patient education to help women recognize early signs and symptoms of preeclampsia, which could guide them to early diagnosis and improved clinical management.

Little is known about how many prenatal care providers discuss preeclampsia with their patients or if women understand what is communicated to them when such discussions occur. In response to this fundamental gap in knowledge, the Preeclampsia Foundation conducted an internet-based survey in March and April of 2008 to determine what women learned about preeclampsia in the context of prenatal care during their first pregnancy (2000-2008). The study is currently being submitted for publication, but the results were surprising and could help health care providers make informed decisions about patient education.

Only 40% of the women indicated that their prenatal care provider "definitely" described preeclampsia; 35% said they were "definitely not" given information about preeclampsia, and the remaining 16% did not remember. Of those who definitely had preeclampsia described to them, slightly more than half said they "fully understood the explanation," 37% "understood most of the explanation," while 15% either "understood some of the explanation," or did not remember.

Here is the really interesting bit: a full 75% of women who said they "definitely" received information on the signs and symptoms of preeclampsia and understood "fully" or "most" of the explanation, indicated that because of this information, they took one or more of the following actions:

Reported symptoms to their provider,
Went to the hospital,
Monitored their own blood pressure,
Complied with an order of bedrest,
Responded in some other way (e.g., made dietary changes, did their own research on preeclampsia).

However, of those who did not understand the explanations provided, only 6% took any action based on the presence of symptoms.

Survey participants tended to be well-educated and middle class, making the importance of what we learned from this online survey clear: even among well-educated, middle-to-high income women, a substantial proportion were not told about preeclampsia or did not fully understand their providers' explanations about the signs and symptoms of preeclampsia. Our findings likewise suggest that when women know how to recognize the signs and symptoms of preeclampsia and they understand the explanation offered, they are likely to act on that information and contact their provider or go to an emergency department.

It follows logically that women with fewer resources and less education, who may also be at higher risk for preeclampsia, may receive and retain even less information; and due to disparities in health care access, they may not have adequate resources to report symptoms to a provider.

Education about preeclampsia and related hypertensive disorders must continue into the post-partum period so that women can recognize prodromal symptoms of post-partum and late post-partum eclampsia. Most cases of eclampsia that develop after the first 48 postpartum hours are first seen in an emergency department. A woman with legitimate complaints who presents at an emergency department may leave untreated if the staff are emergency or trauma providers, not OB/GYN specialists. Thus, women not only need basic education in preeclampsia, but they require repeated education to ensure they understand the risks and can be empowered with knowledge that will allow them to advocate strongly for their own care.

We offer several recommendations based on our observations:

More research is needed to fully assess the health literacy, knowledge, attitudes, and behavior of pregnant women and to examine the practices of prenatal care providers;
ACOG/AAP guidelines for prenatal care should include more deliberate and detailed explanations of the hypertensive conditions of pregnancy;
At all prenatal visits, providers should clearly explain warning signs and symptoms with directions about what their patients should do if they experience or recognize any of the signs or symptoms.
All women should be hearing a strong public health message that they can and should be advocates for their own care.

Guest columnist Dr. Anne B Wallis, University of Iowa, also wrote on this topic in her blog, [bloga epidimiologica]. It's worth reading the longer version, especially if you like the science-y stuff.

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Posted on in Health Information

<p>Awareness that good outcomes don't always happen helps us prepare while hoping for the best.<a href="/component/lyftenbloggie/2013/03/04/173-awareness-that-good-outcomes-dont-always-happen-helps-us-prepare-while-hoping-for-the-best" target="_blank"></a></p>
<p>Just because a pregnancy is classed as high-risk doesn't mean that it will become medically complicated - and just because a pregnancy is classed as low-risk doesn't mean that it won't. Many of us know this firsthand; we were low-risk right up until the complications developed in our first preeclamptic pregnancy, or went into a subsequent pregnancy classified as high-risk, only to breathe a sign of relief as we delivered a full-term healthy baby.</p>
<p>We've all seen the list of risk factors for preeclampsia: first pregnancy, personal or family history of preeclampsia, underlying conditions like chronic hypertension or lupus or autoimmune conditions, obesity, history of infertility or prior miscarriage. Awareness of your own risk factors is key to managing them prior to and during pregnancy and might lower your risk. For example, chronic hypertensives have a one in four chance of developing preeclampsia, and if they do develop it, their risk of stroke is probably lessened if they began pregnancy with well-controlled pressures.</p>
<p>Knowing how to access care providers who specialize in medically complicated pregnancies is another sort of awareness. Do you know where the closest NICU is? Do you know how to find a maternal-fetal medicine specialist who conducts research into HELLP syndrome? Do you want to plan to move closer to a particular hospital during your third trimester because of your history and the distance?</p>

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Be aware of your long-term health risk factors and communicate them.

We've all seen the risk factors for cardiac disease: high blood pressure, high cholesterol, inactivity, obesity, smoking, and history of preeclampsia. Awareness of your own risk factors is key to managing them as you age and might lower risk of cardiac disease.

A recent analysis of the accuracy of our recall of our pregnancy histories by a team of researchers at the Harvard School of Public Health showed that we may not remember our complicated pregnancies well enough for questions about them to be a useful part of a screening tool. For our recall to be useful as a clinical tool in screening for heart disease, we need to be mostly accurate in our recollections years after delivery. (Imagine a 55 year old in her internist's office this week, asked for details of her pregnancy 30 years ago...) But the analysis also showed that as severity of our pregnancy complications increased, accuracy of recall also increased.

Regardless of whether or not a question about our pregnancy history makes it into a formal screening tool, our awareness of our histories and the risks they pose, communicated to our care providers, is another key to good healthcare. Those of us who do remember, or who have our records, can communicate this risk factor to our care providers and ask for appropriate support.

Knowing how to access lifestyle management tools is another sort of awareness. Do you have a plan for gym time? Do you need statins? Have you had your health evaluated by an internist or cardiologist who knows of your pregnancy history and who understands that your history increases your risks?

 

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Answer: Every woman who ever uttered the words, "If only I knew..." after being stricken with preeclampsia. 

A Message from Executive Director Eleni Z. Tsigas

The executive summery of the eagerly anticipated new guidelines for the diagnosis and management of hypertension in pregnancy was just published by the American College of Obstetricians and Gynecologists (the College) in the electronic version of their November journal. 

The guidelines include a recommendation to provide preeclampsia education to all patients as a means of improving pregnancy outcomes. Healthcare providers need to inform women during the prenatal and postpartum periods about the signs and symptoms of preeclampsia and stress the importance of contacting healthcare providers if these are evident. 

The College is assuring its members that this can be done without increasing patient anxiety and by using effective health communication practices. We can help with that. Our educational materials are credible and shown to be effective, even with patients with lower health literacy. Our illustrated signs and symptoms tearpad was created and tested for just this purpose. 

We consider it an important accomplishment that the College and several state initiatives now include patient education as a routine recommendation and consider it a central consideration in all discussions about patient safety and quality improvement. Patient education early in the prenatal period, during pregnancy, and again after delivery (at the start of the postpartum period) is considered a best practice. 

Despite what I believe is a nationwide movement in patient education in preeclampsia now sweeping the country, the fact remains that this will be for naught if our healthcare providers don't act quickly and accurately when sick patients present for care. Thus, our mission must continue to include education for those who care for expectant and postpartum mothers, as well as partnering with numerous professional and consumer organizations to advance quality improvement and patient safety initiatives to reduce maternal and perinatal mortality and morbidity. 

Numerous articles this month reflect the power of women and their surviving loved ones telling their personal stories and crying out everywhere: "If only I knew..." We salute the power of these collective voices and what you have already accomplished! Thank you.

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Patient-centric care, a buzzword in healthcare reform, should be the obvious goal for any health care system. "What a concept," I utter with a hint of sarcasm. Put the patient at the center of the decisions, resources and desired outcomes?!

However, patient-centric care is also dependent on a related concept: the "empowered patient," a subject CNN medical correspondent and fellow preeclampsia survivor Elizabeth Cohen writes about in her column and book, The Empowered Patient, available in our Marketplace.

An empowered patient is one who has the information she needs to act proactively upon her preeclampsia symptoms. She also has an effective relationship with her care provider(s) so she can communicate her concerns, ask questions, comply knowingly with agreed upon treatments, and make educated decisions. And if she doesn't have the appropriate relationship with her providers, she is confident about asking for what she needs or seeking help elsewhere.

Sometimes it takes a third party to help her get what she needs. A trusted partner, family member or friend sometimes fills that void. Often, our Community Forum becomes that life-saving voice that pushes her to seek immediate medical attention and acknowledge that inner voice that says something just isn't right.

A great example is this case, when Jonathan Barker became a worried husband, got involved in his wife's care and later said, "One piece of advice that the moderators on the Foundation's Forum always shared is that preeclampsia can strike at any time and can get very ugly, very quickly. It is a piece of advice that made the difference." And if you want a laugh about this empowered dad stepping in, read about his experience shopping for nursing bras. That's one lucky wife!

A recent mom had extreme birth anxiety, which is not uncommon for preeclampsia survivors. She advocated for herself and was able to get a sedative during delivery, improving her birth experience considerably.

A mom who had lupus, putting her at much higher risk for preeclampsia, wasn't receiving the kind of care or information she should have. She changed providers thanks to the encouragement of her online support system. Later, despite having preeclampsia, she wrote, "Thank you guys so much! I couldn't have gotten to this finish line without you! I was so knowledgeable and cautious. Got that from this website!"

These stories and many more confirm the importance of sound information and strong support guiding your role as an empowered patient, one of the hallmarks of patient-centric care.

I want to thank Heather Curtis and all our Forum moderators for the smart and empathetic support they provide every day. It's not an understatement when we say they have literally saved lives!

 

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That was my goal with the once-in-a-lifetime opportunity I was given to present one of three President's Program lectures at the American College of Obstetricians & Gynecologists' Annual Clinical Meeting.

"Patient Perspectives on Preeclampsia" - or as I joked, "lessons from this side of the stirrups" - was well-received by the standing-room-only crowd in the main auditorium of the San Diego Convention Center. More importantly, the many comments I received after the lecture satisfied me that I achieved my objective - to reach their hearts with compelling, real-life stories illustrating the impact preeclampsia has on mothers, fathers, and babies; and to reach their minds by inspiring clinical practice behaviors that include educating each and every expectant mother with non-alarmist, but sound information about the signs and symptoms of preeclampsia, as well as addressing the psychological and long-term physical impact of the disease. (Presentation available for purchase)

If you have ever shared your experience with us, know that you, and the stories of 10,000+ other women, were with me in spirit on May 7. The ACM News wrote about my presentation and the other two preeclampsia lectures (delivered engagingly by renown preeclampsia researcher Dr. James Roberts and clinician Dr. John Barton).

The awareness and education theme was echoed in a Foundation news announcement at the San Diego Promise Walk. With co-authors Dr. Doug Woelkers and Ms. Jennifer Carney, we announced our official list of the Top 10 Pregnancy Guidebooks. This report was created using five criteria designed to ascertain how well the books treated the topic of preeclampsia in a way that would be useful to the one in 12 pregnant women whose pregnancies become complicated by it. Several of the top guidebook authors have already contacted us, thankful that their diligence has been recognized, even while women's real-life feedback has reinforced our findings that the bestsellers aren't always the best books.

And although I'm no Twitter expert, it was fun to join College staff and two Ob/Gyn physicians on a Twitter Chat on preeclampsia that resulted in tens of thousands impressions, and to shoot a quick interview that was aired onsite for the 5,000+ people in attendance.

By all accounts, the entire experience left us all exhausted, but exhilarated. We frequently tout the importance of a patient-provider relationship and it was abundantly evident that the country's leading Ob/Gyn organization shares this goal. We are very grateful.

 

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May and Mother's Day are so intertwined that it's hard to think about one without the other, especially here at the Preeclampsia Foundation, where we've built a nationwide campaign at www.promisewalk.org/campaign to get the word out about preeclampsia - the "thing" that for many survivors turned our entrance into motherhood into a nightmare.


I believe celebrating mothers is a commemoration of extremes. Not just because preeclampsia is an extreme condition, but because the mothers I am privileged to know represent the extremes that make up all mothers: soft and tough, nurturing and driven, catalytic and comforting, impatient and optimistic.


Next Monday, I'll be representing you to 5,000 Ob/Gyns at their Annual Clinical Meeting in San Diego. You've heard us espouse the importance of the patient-provider relationship; now we need "the docs" to embrace their half of the partnership. Who better than an "extreme" mother to tell 'em so?

And, starting next weekend, that same message about the power of knowledge - along with a clarion cry for more research to solve this puzzling problem - will be spread across this country, via The Promise Walk for Preeclampsia. Which Promise Walk are you supporting? We use the walks to force ourselves into the consciousness of our communities and to say "Do not take for granted this thing we call birth." It is can be the most beautiful thing and the most tragic thing to happen to us. Help us end the tragedy.

"Before you were conceived, I wanted you. Before you were born, I loved you. Before you were here an hour, I would die for you. This is the miracle of Mother's Love." ~ Maureen Hawkins


"Well behaved women seldom make history" ~ Laurel Ulrich

Two quotes representing who we are at the extremes. The first one, obvious. The second one, despite its Mae West undertones, I like to think of as the reason "bold" and "influential" are two of our organization's core values. We're here to be effective and sometimes that means making some noise, ruffling some feathers. I guess that brings me back to my lecture to 5,000 physicians. I hope they're ready!

There are lots of ways you can be a mother at the extremes this month.

  • Join us for one of our Twitter Chats with the March of Dimes (Thursday, May 17 at 1 PM) and with HealthyWomen.org (Thursday, May 24 at 12 noon).
  • Click to make your Facebook profile picture our Preeclampsia Awareness Month image throughout the month of May.
  • Share your story in your local community, using any of the resources available on the Awareness Month Campaign page.

We're honored to have you in our tribe. Happy Mother's Day!

 
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I am an expert on me stickerThe term “empowered patient” has become overused and often exhausting to embrace. If that sounds completely contrary to what we’ve been espousing at the Preeclampsia Foundation, it’s because over time and in an increasingly complex health care system, for most of us, what is expected of us as “empowered patients” has become too big to manage. So try to keep it simple and doable.

5 Steps to Being “Empowered”
The cornerstones of being an empowered patient, particularly when faced with a complicated pregnancy, include:

1. Knowledge. Access to understandable and accurate health information is essential to empower a woman to participate in her care, and patient-centered organizations take responsibility for providing access to that information.
2. Participation. This means taking steps like getting your lab results, and engaging your provider in questions and answers.
3. Find another provider if #2 above isn’t working. We’d like to see all providers wearing stickers that say “I’m listening.” If yours isn’t, look elsewhere.
4. Listening to your body, and sharing that insight with a receptive provider. Patients are partners and have knowledge and expertise that is essential to their care.
5. Have your own advocate, especially when things really start to fall apart and you are not mentally or sometimes physically “present” and alert. This may be a husband, partner, mother, sister or best friend.

This month, we’re focusing on #4 which is also one of the hallmarks of patient-centered care.

There’s a reason we’ve stuck by one of our core messages – Know the Symptoms, Trust Yourself – for so long. While we are not so naïve as to think all preeclampsia tragedies will be staved off by getting an earlier diagnosis, we do know from story after story, that women often know that something is going wrong before her health care providers do. We sometimes joke about having a “sixth sense”, but “I just knew something was wrong” is a very common refrain, and it may not accompany the classic symptoms about which we provide patient education.

One of our members, Laura Daigle Muller, Anchorage, Alaska, saw her first pregnancy deteriorate over the course of a month. Her blood pressure began creeping up though was still within “normal” range, she had swelling, and a strong intuition that something was wrong. When she reported the symptoms to her midwife, she was brushed off, but Laura heeded that not-to-be-ignored inner voice and took herself to her hospital’s labor and delivery unit to be checked over. Turns out, she had severe preeclampsia, was immediately admitted and delivered shortly later. She credits her insistent intuition with saving her and her baby’s life.

“Mother intuition is a funny thing, but I'm glad God gave it to us,” writes “phoenix-mama” in our Community Forum. “Monday I started feeling off... and had this nagging intuition that wouldn't set still.” Even after calling her midwife and checking her blood pressure on a home machine, she “couldn't shake the niggling feeling I had, so I decided to go in.”

It turns out her proteinuria was in the severe preeclampsia range and she was immediately admitted to the hospital. Had she not heeded her intuition it would have been several weeks before she was scheduled to see her care provider and a lot could have gone wrong in that time.

"Mellybute", another Forum poster, described her “feeling” this way: “It's hard to pin point exactly when, but for sure in my second trimester I knew there was something going on with me. I did not know what [preeclampsia] was then or the signs and symptoms or I would have known exactly what was going on with me.”

Sometimes that inner voice may be a lifesaver. “Being in tune with my body (knowing I felt off) really saved my life. Honestly, I baffled the medical staff...the fact I felt it coming on before/while it really turned severe,” writes “kellikbock” on our Forum.

Unfortunately, we’ve become so “smart” about medicine and drilled on the value of evidence-based choices, that we’ve forgotten that we are very qualified experts on ourselves. The two halves must work together -- your care providers bringing well-grounded medical experience with and deep respect for preeclampsia; and you, the pregnant mother, bringing 20-30-40+ years of experience, deep respect, and understanding of your body.

We have intellectualized the intuition right out of ourselves. When that quiet voice deep inside says “something’s not right”, don’t ignore it. Please. Wear a sticker proudly that says “I Am an Expert About Me” and call liberally upon your tangible and visceral evidence to contribute the information your health care providers need to support your pregnancy.

Do you have a “sixth sense” story about your pregnancy? Please post it here or on our Facebook page.

 

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The Preeclampsia Registry

    The Preeclampsia Registry is a "Living Database" bringing together those affected, their family members, and researchers to advance knowledge and discover preventions and treatments for preeclampsia, HELLP syndrome, and related hypertensive disorders of pregnancy.

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