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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Posted on in Research

Is there a nutritional connection to preeclampsia? That idea seems plausible at first, as when the blood samples of women have been analyzed, some researchers have found altered levels of various vitamins and minerals. Furthermore, preeclamptic women have altered patterns of weight gain during pregnancy; and obese women are more likely to develop preeclampsia.

 

Such considerations may lead one to speculate that certain diets may prevent or reverse the disease, in which case the appropriate diet becomes a therapeutic intervention. However the best research to date suggests this just isn't so.

 

Reviews of all the trials we could locate show that the major and well-designed trials mainly show no benefit. The very large trials show either no benefit to the generalized population (i.e. Calcium supplementation), or even potential harm (i.e. Vitamins C and E). Likewise, attempts to alter rate of maternal weight gain during pregnancy towards normal levels does not alter preeclampsia rates either.


In some instances, preeclampsia itself might be causing the alterations in nutritional status. The placenta, because it is shallowly implanted, needs to use other strategies to improve its ability to ferry nutrients to the fetus, strategies that include altering the maternal metabolism. In addition, obese women may be more likely to carry genes that both make them more likely to develop obesity in a modern environment and to develop preeclampsia in pregnancy.


The example of Vitamin D shows how one such supplementation research line has developed and been disproved. Sure, vitamin D levels are lower in early-onset preeclamptic women, but this happens once the symptoms of the disease have already appeared. And if we check women at the end of the first trimester, the women who will go on to develop preeclampsia cannot be picked out of the rest of the population. Some reviewers wonder if the researchers analyzed the correct form or metabolyte of Vitamin D when deciding if the woman is "deficient." Supplementing vitamin D doesn't seem to do much beyond raising vitamin D levels in blood work

 

That said, there is an important role for nutrition in pregnancy and it behooves everyone to check with a qualified health care provider to assess the appropriateness of their diet as soon as they learn they are pregnant.

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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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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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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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What was your experience with preeclampsia?

 

On February 17th, 2005 I was so blessed to become a mom to a beautiful, blue-eyed, baby boy. Roddick was born 2 weeks early, by emergency c-section, due to my blood pressure staying elevated, even with bed rest. My husband was out of town for work, so he missed the birth of his 1st child. It was crazy, nurses and doctors running around trying to get me into surgery and deliver my son. Much of the delivery was a blur. They had me on and off mag sulfate to control my bp. I felt so awful, I kept thinking that this surely couldn't be what it felt like to be a new mom. I felt so bad that I didn't even have the warmth and compassion I should have had for my newborn. The next day my situation declined. I was in my room alone with my newborn son. I decided that I needed to get up, get to the bathroom and freshen up. I pulled Roddick's basinet into the bathroom with me, washed up, and headed back to the bed. I was completely exhausted! I finally got settled back into to my bed. As Roddick lay sound asleep in his basinet next to my bed, I noticed that the letters and numbers lifted up off of the tv screen I was watching, and started to float across the room. I thought that was really weird. I decided that I better call the nurse and let her know. By then it was too late. There, alone, I had my 1st eclamptic seizure. I'm not sure of what happened exactly, I don't remember anything until a day or so later, after which I had experienced ANOTHER eclamptic seizure. I woke up, finally, in the ICU. On the wall, across from the end of my hospital bed, hung a picture of my sweet little baby boy. This picture was the only way I was able to see him for several days. It felt like my heart was broken. This was my 1st of 3 experiences with preeclamptic pregnancies; 3 preeclamptic pregnancies and my babies and I were blessed to survive.

 

My brother, a Physician's Assistant, had never seen anyone go through what I went through. A week or so after I was discharged from the hospital, he was able to use my experience to help diagnose, and treat, a woman in his ER. I believe my experience may have helped to save her life.

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


I have always felt that my doctor didn't 'scare' me enough and I wasn't told much about preeclampsia. I was put on modified bed rest, but since they didn't seem too concerned, I didn't see the seriousness of the situation. So modified bed rest, to me, was just putting my feet up a little more often. I could have done so much more to take care of myself and my baby. I later learned that this particular doctor had never had a patient experience eclamptic seizures. When I asked this doctor if I should see a perinatologist for my next pregnancy, she said "I don't see why. Your blood pressure was never really that high." Needless to say, I found another doctor and I made sure to find out all I could about preeclampsia and eclampsia.

Why do you volunteer for the Preeclampsia Foundation?


I feel so very strongly that we need to do all we can to spread the word about preeclampsia and other hypertensive disorders. Most importantly to find a cure so that lives can be saved. I'm hoping that doctors will find a way to communicate with their patients about the seriousness of these disorders.

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


I have spent the last year training for a 50 miles trail race. The race will take place December 15, 2012 on Look Out Mountain in Chattanooga, Tenn. I decided to run this race in remembrance of all the lives that have been taken by hypertensive disorders of pregnancy and also to celebrate being a survivor of preeclampsia & eclampsia. I made a goal to raise $2012 for the foundation. During this year of training, this has really become so much more to me. It has been an emotional ride (or run, I should say) and I'm excited to step foot on the trail and give it all I've got. No matter whether I finish the race or not, I've still won the battle.

 

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


Being able to bring awareness of these disorders to people who would have otherwise had no idea about them. Since I'm a survivor, I know first hand what it's like to experience preeclampsia and eclampsia. I'm invested in it and therefore I can relay the importance for fundraising and finding a cure. It feels wonderful to know that donations are coming in and we are getting one step closer to finding a cure!

 

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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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By Quincy Fleming ~ Physical activity is something that my husband and I have always enjoyed, so it is only natural that my children have also gravitated towards endurance sports. It takes a lot of time and creative scheduling to get workouts in, but instead of trying to keep the workouts and family time separate, we find all kinds of crazy ways to include our two children. In fact, my husband and I are currently training for an Iron Distance Triathlon. Why, you might ask?

My children and I are preeclampsia survivors. And while we are lucky to have escaped with our lives, our health, our sanity, I know that we are at a heightened risk for heart disease, diabetes, obesity. It seems every lifestyle disease out there carries an extra punch for us. So we asked ourselves: why not embrace healthy lifestyles and exercise as part of our everyday family time?

Unfortunately, because the life that includes raising small children is demanding and time consuming, physical activity often becomes viewed as an adult selfishness to be discarded in favor of doing "more important" things for our children. But taking care of yourself IS doing something for the children. And more importantly, is setting an example for your children.

So from our active family to yours, here are some strategies to get the whole family moving:

1. Go somewhere fun for the kids and have Mommy and Daddy take turns getting in a workout. Summers at the beach is a great opportunity: one of us will start out with the kids building sandcastles and playing in the waves, while the other one goes for a swim, bike, or run, then switch. And be sure to remember to spend some time together, too!

2. Plan a day trip or vacation around physical activity. I am not suggesting you take the kids biking in the Alps here. (Actually, I am... that would be awesome! Can I come along?) But you could definitely tour a place by walking or biking, or, incorporating physical activities into your trip. I am all for relaxing. And eating. But I try to keep it in smaller proportion to moving.

3. Move together.
Take the stairs, park far away, walk somewhere you would normally drive. Put on some music and dance. Go to the school playground and shoot some hoops. Or kick it with a soccer ball. Toss a football around. Play tag. Roll down a hill. Take a flashlight out and do a nighttime walk. Have underwater tea parties at the pool. It doesn't have to be earth shattering or a monster workout. Just do something that makes you move more than you normally would: because it beats sitting on the couch!

4. Compete. Play games with your kids and don't always let them win. Encourage them to try to be the best at something. Kids are awesomely egotistical and competitive. They are actually kind of fun and funny this way. Enjoy it, feed off of it a bit, because trust me, they will LOVE it!

5. Sign up. Most kids can run/walk a 5k...so can most adults. If they are too little to run/walk, they can ride in a stroller... so why not sign the family up for a family race? Many events have themes, support and post-race activities and are geared towards families (including your local Promise Walk for Preeclampsia!). Even if your 7 year old complained the whole time, he will proudly proclaim he has run a 5k once the race is over. And for the rest of their lives, they will know they can do it and will be much more likely to do it again.

I'm not encouraging everyone to run out and sign up for some crazy endurance event (leave that to me). But I am encouraging you all to get out with your families and MOVE a little bit. Walk, run, swim, bowl, dance, jump, climb, whatever gets you active. And whatever it is, do it together!

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The October 2011 issue of Expectations (featuring patient-centered care month) highlighted two powerful, silver-screen accounts of parents confronted with the unthinkable: a child's health crisis with no known cure leading doctors to tell them "there is nothing more we can do." Those simple words - and the prospect that there was no hope - prompted these every-day parents to take on the most important "projects" of their lives: saving the lives of their children.

These extreme examples of patient advocacy provide a humbling reminder of how important our own voices - and understanding of our conditions - are in our individual health care (during pregnancy and otherwise).

In thinking about patient advocacy in relation to my own pregnancy, I am ashamed I didn't ask more questions when I was ordered to take my first (and then second!) 24-hour urine test. I didn't know that a 24-hour urine test wasn't routine, and my doctor was certainly not offering up any unsolicited explanation. I was too shell-shocked to ask any intelligent questions when she took my blood pressure a few days after I returned my second urine sample and simply told me I had "earned a vacation in the hospital." In my recollection - and that of my entire family, who shared in all the details of my pregnancy and have since been grilled on this subject - there was no mention of the word preeclampsia or HELLP syndrome until much later.

Those were the opportunities I missed. It wasn't until weeks later when I had come out of a coma and begun recovering from multiple organ failure that I saw a glimmer of my ability to advocate for myself. Growing tired of the feeding tube that was giving me sustenance (and a very obvious indication and reminder of my less-than-hopeful situation), I became committed to getting it out. I lobbied my doctors for a follow-up swallow test in the hopes that this would be the one that I would pass. I did, the feeding tube was removed, and it wasn't much longer until I was home, caring for my baby daughter, and back to a "normal life." Ultimately it was an important milestone representing the first step I could take toward setting my own recovery process.

CNN medical reporter and author Elizabeth Cohen advocates for making sure we get our business "DUN" when at the doctor's office: find out our diagnosis, understand the plan to make us better, and learn the next steps toward feeling better. She recommends the following simple questions to get the ball rolling and to gain clarity on our personal health status:

  • What's my diagnosis?
  • Which drugs should I take, if any?
  • Are there any other treatments or instructions?
  • Do I need a specialist? If so, do you have a specific recommendation?
  • How long should I wait for this treatment to work?
  • If my problem doesn't get better in that time, what should I do?
  • Am I awaiting any test results? If so, when are they due back in your office?


And, during pregnancy, the following questions may be important to ask:

  • What was my blood pressure?
  • How much protein was in my urine today?
  • Does my weight gain over the last few weeks seem okay?
  • What other symptoms should I be looking out for?

I asked none of these questions and didn't appreciate enough how the age of managed care, rushed doctor's visits, and healthcare reform might be affecting my pregnancy. It wasn't until much later when I needed hope that I began advocating for myself. Now more than ever, though, we all need to prepare to work with our doctors to get the best care we can - and to have hope that there can be a positive outcome.

 
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Last month, we posted a lengthy article titled Screening Tests for Preeclampsia. On August 14, a press release from PerkinElmer announced the launch of its new screening test for early onset preeclampsia, Preeclampsia Screen™ | T1. This month we posed questions to PerkinElmer Labs/NTD. These are the answers we received to five of the questions, which are representative of the questions you asked us.

How much will the screening test cost?

The list price of the test is $495. This will be billed to a patient's insurance, if available. If the test is not covered by a patient's insurance and the patient takes advantage of applicable payment options, they can expect to spend approximately $200 out of pocket for the test.

Will my insurance cover it?

This is uncertain, at this time, as the screening test just launched on August 1, 2013. It is our plan to submit to insurances and work with them on reimbursement for these new claims.

Will it be available everywhere in the U.S., and can any doctor or midwife order it for me?

It must be ordered by a qualified health care provider who is able to order laboratory tests and who has set up an account with PerkinElmer Labs/NTD. It is available to all qualified healthcare providers in the country.

Is it available outside the US?

Yes. Samples can be received at PerkinElmer Labs/NTD from outside the U.S., as long as they conform to all sample and shipping requirements, including any international regulations.

Will the screening test tell me when I might start getting sick, if I'm going to get PE?

The test will not tell you or your healthcare provider when you may begin having symptoms of preeclampsia. What it can tell your healthcare provider is whether or not you are at increased risk of developing early onset preeclampsia, which is preeclampsia that results in the delivery of the fetus before 34 weeks gestation.

 
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If you're a new mom, your own heart health may be the furthest thing from your mind, but if you're a preeclampsia survivor, it's something you and your physician should discuss. Why? Because research has shown that preeclampsia, along with a few other pregnancy complications such as fetal growth restriction and preterm birth, may predict your future heart disease.

Studies have found the following associations between pregnancy complications and cardiovascular disease:

  • A history of preeclampsia increases future risks of high blood pressure, heart attacks, stroke, blood clots, and kidney disease.
  • Women who have repeat or severe preeclampsia, or preeclampsia accompanied by still birth are at greater risk of cardiovascular disease than women who have high blood pressure only and during a single pregnancy.
  • Women who had growth restricted babies or who delivered preterm were found to have higher blood pressure 18 years after delivery.
  • The risk of pregnancy complications and later cardiovascular disease is cumulative. Women who experienced preeclampsia, preterm birth, and fetal growth restriction were found to have 7 times the risk of hospital admission or death from coronary artery disease.

This and other pregnancy and heart health information can be found on Seconds Count, the patient information website of the Society for Cardiovascular Angiography and Interventions (SCAI). Experts there suggest 6 questions you should ask your healthcare provider about pregnancy complications and heart disease:

  1. I had high blood pressure during pregnancy. Are there steps I should be taking now to monitor my heart health?
  2. I had a fetal growth restriction complication or delivered a preterm baby. What should I be doing for my best cardiovascular health?
  3. What risk factors (unrelated to pregnancy) do I have for cardiovascular disease, such as diet, family history, etc.?
  4. Do any of my test results indicate risk factors for heart disease, such as high cholesterol?
  5. Do my overall risk factors or risk factors related to pregnancy suggest that I should be referred to a cardiologist?
  6. Are there lifestyle or medication changes that would benefit my heart health?

Sadly, a study by Rana, et al (2011) found that a substantial proportion of internists and OB-GYN physicians at a major hospital in Boston were unaware of any health risk associated with a history of preeclampsia. The authors concluded that this deficiency may affect the clinical care they provide. That means that as the patient, you may need to print out this information and take it to your physician so they know why your pregnancy history matters.

It's unlikely you will need stents or bypass surgery, but a good number of preeclampsia survivors report difficulty getting their blood pressure to return to normal and may need, even temporary, medications to normalize their BP.

John P. Reilly, M.D., FSCAI, editor-in-chief of SecondsCount.org and Vice-Chairman of the Department of Cardiology at Ochsner Medical Center in New Orleans said, “We are committed to informing our patients and other healthcare providers about the link between preeclampsia and future heart disease, and the importance of managing cardiovascular risk factors in preeclampsia survivors.”

However, without solid evidence for what post-preeclampsia follow up care should include, what should you do? Experts in the field have helped us develop these common sense guidelines to reduce your risk of heart disease:

  • Eat a heart healthy diet and get regular exercise.
  • Stay at a healthy weight, specifically a BMI of 25 or less.
  • Don't smoke.
  • Talk with your doctor about your specific family health history, your pregnancy history and the benefits of taking low dose aspirin.
  • Know your numbers - blood pressure, cholesterol, and blood glucose - and ensure these stay in the healthy range.
 
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Encore Public Relations was named a Bronze Stevie Winner in the PR Campaign of the Year/Community Relations category in the 9th annual Stevie® Awards for Women in Business on November 9 for their work with the Preeclampsia Foundation. Encore Public Relations lead strategy efforts and execution for a multi-platform campaign that raised awareness during the 2012 annual Promise Walks for Preeclampsia across the country.

"Ironically, it was during this same weekend last year when we had the good fortune to meet Laurie and Elaine in New York City," said Eleni Tsigas, Preeclampsia Foundation's executive director. "The women were in town for another honor they were receiving and via wonderful circumstances, we were brought together at Saving Grace, our annual benefit gala."

Laura Archbold, principal of Encore Public Relations, upon receiving their award, said. "We humbly accept this honor on behalf of our client and their important and critical mission."

More than 1,200 entries were submitted this year for consideration in more than 90 categories, including Executive of the Year, Entrepreneur of the Year, Women Helping Women, and Communications Campaign of the Year.

More than 130 business professionals worldwide chose finalists during preliminary judging. More than 90 members of the five final judging committees determined the Gold, Silver and Bronze Stevie Award placements from among the Finalists during final judging.

Details about the Stevie Awards for Women in Business and the list of Finalists in all categories are available at www.StevieAwards.com/Women.

 
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By Dr. Linda Burke-Galloway ~ October is Patient Centric Care Month, a term you will likely see more of as our healthcare system moves further into the 21st century. What does 21st century healthcare look like? It means that all of your records will be computerized and not on paper. It means that you will receive your "chart" on a flash drive so that when if you leave your physician's office and go to a hospital, your health records remain with you. Gone will be the days when your labs will have to be repeated because no one can locate your prenatal chart. Repeating labs is not only annoying, it's costly.

"Patient Centric Care" means that the emphasis will no longer center on your physician. Or a hospital. Or an ambulatory care center. It will be centered on you, the patient. Why? Because at the end of the day, if you're not well, if the outcome was less than expected, then the system has failed. The $2.3 trillion dollars spent each year on healthcare has not provided a "return" for its investment.

Traditionally, the physician or healthcare provider was looked upon as an authority, but you, the patient, have now taken center stage. Under patient-centric care, healthcare providers will function more like coaches and you, as the patient, will be expected to become more involved in your care. For a pregnant mom, this is critical. Gone will be the days of physicians "rushing through patients," barely listening to the fetal heartbeats and missing important clues that could compromise your care. Why? Because of the use of electronic medical records and the new system of "pay for performance." The electronic medical records have safety measures programmed into its system making it difficult for doctors to miss important red flags. Physicians will not be paid based on their number of office visits but by the outcome of the patient. Did the care provided by the physician improve the patient's health? That is the basis by which they will be paid.

One of the main reasons for missing a diagnosis of preeclampsia is that someone is not paying attention. Somewhere during the course of your care, someone drops the ball. The blood pressure that has been creeping up for the past 2 visits is not addressed. The protein in the urine ignored. The 5-pound weight gain in one week overlooked. The new complaint of a headache not heard. Unfortunately preeclampsia does not always present in textbook-fashion in the manner that we were taught in medical school. It has many disguises and there must be a high index of suspicion for those disguises to be recognized.

In business, there is something called a "butterfly effect" where one "small" missed detail can cause big problems. The same principle can be applied to medicine. When a "small" risk factor of a patient is overlooked, it places her in harm's way. Women who are pregnant for the first time, especially those who are under 18 and over 35, are at risk for preeclampsia. All African American women are at risk. Women who have a history of hypertension are at risk. All of these patients should be duly informed at their first prenatal visit of the potential for developing preeclampsia. The purpose is not to alarm but to inform.

Patient-Centric-Care Month is a time for celebration. The patient has finally returned to center stage. Although long overdue, better late than never.

Linda Burke-Galloway, MD, MS, FACOG, is the author of The Smart Mother's Guide to a Better Pregnancy, one of the Top 3 books in our Report on Pregnancy Guidebooks. She is also an Ob-Gyn Patient Safety and Risk Management Expert.

 
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Findings from several studies support the hypothesis that stress caused by a traumatic pregnancy and delivery can often override the ability to emotionally cope, leading to psychiatric complications such as post-traumatic stress disorder (PTSD) and post-partum depression (PPD). The combination of suffering a serious illness, combined with an unexpected caesarean section, birth of a premature child, or infant loss, is a heavy burden to bear both physically and psychologically.

Preliminary research findings, including a study initiated by the Preeclampsia Foundation, suggest that women who have endured traumatic pregnancies such as severe preeclampsia, eclampsia and HELLP syndrome have a higher incidence of PTSD and PPD than women without these complications. More research is needed to help move this information to clinical practice, but anecdotally enough of our survivors are impacted, that we offer these recommendations based on general trauma recovery practices.

Be patient. Recovery is an ongoing process with a different pace for everybody. However, if you are unable to care for your children or basic responsibilities of life, you should seek professional help. Coping mechanisms that may work for you may not work for your spouse or other family members, and vice versa. Healing doesn't mean you will have no pain or bad feelings when thinking about the pregnancy experience, but that you can develop more confidence to be able to cope with your memories and feelings.

Understand your pregnancy experience. Communicate with health care providers to understand the medical and emotional aspects of the experience. If necessary, ask to be referred to a qualified counselor. Whether you are dealing with the loss of a child, the loss of your health or the loss of your “sought after” pregnancy experience, mental health professionals can help you recover normal functioning in life skills. Plus, the Preeclampsia Foundation has great online and print health information resources for you and your family.

Stay connected. Research shows that good social support is vital to recovery. Stay connected in particular with your family and friends. You might also consider joining a support community, whether it is signing up for the Foundation’s Community Forum (www.preeclampsia.org/forum) or contacting your local health department or hospital services for a grief support group. Also, don’t forget that if you are in a relationship or married, severe trauma can be challenging to both partners, so be proactive to strengthen that vital relationship.

Find a great hobby. Not only does it boost your self-esteem, you will connect with people who share interests that are outside of your pregnancy experience. Find a subject about which you are knowledgeable and passionate. For instance, many women find comfort in the life-affirming aspects of nature: go for walks, start a gardening project, or volunteer at a local park or animal sanctuary.

Keep a journal. By writing things down, you can temporarily dissociate yourself from the world and start to chart your road to recovery. Write in it every day, even if it is only to state three good things that have happened that day.

Set goals. Start by setting small goals and commit to doing it. Make a list of all the things you used to enjoy and revisit them. Decide which one you are going to focus on and make a small start. Someone close to you can help you be accountable for your progress… or even join you to complete those goals!

For more information about PTSD or PPD research, or citations for these recommendations, please email info@preeclampsia.org.

 
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