A longer article from the Preeclampsia Foundation will be posted by the Association of Women's Health, Obstetric and Neonatal Nurses (AWOHNN) in May. Here are the highlights. A survey or our members brought to light the following top 10 ways nurses can be sensitive and helpful to preeclampsia patients.
1) Thank you for educating me to know the symptoms and how dangerous preeclampsia can be.
2) Thank you for being willing to listen and learn from the women you care for.
Remember the moment when you embraced maternity clothing? After a few months wearing "roomy" jeans and shirts, you made the leap into a wardrobe consisting of blouses with an empire waist.
There are very few times in our life you wear a patient status so conspicuously. Walking around in maternity clothing informs everyone of your current status. Unlike most other conditions, random strangers remark upon your wellbeing. When things are going well, these remarks can be appreciated as well intentioned. When things are not going well, these random comments can be heartrending.
It is hard to wear our medical status in public. It is hard to bear our soul. But pregnancy is finite; we only have a few months of "showing." Sometimes we have been blessed and become the parent of a new baby and sometimes a life ends before it begins.
The body returns, but a story remains. And I ask you, "Are you showing?"
There is a patient art movement spreading around the ...
Posted in Volunteer Happenings on January 10, 2013 by Administrator
It is the time of year where I spend quite a bit of time reflecting. Since our son's angelversary was December 28th, it's natural to think not only of the past year, but also of the time our lives changed forever. It has been 7 years now since that day and I can honestly say that I would have never believed I would be where I am today. A few weeks after the loss of our son, I was researching on the internet to figure out what happened to me when I found the Preeclampsia Foundation. It was perfect timing to bond with other bereaved parents on the forums. I found healing through the community of sharing our losses and our grief. It was easier to bare knowing there were others I could turn to that had experienced the same devastation. I spent alot of time on the forums and through my time there was where I felt the need to give back. I made it through the blackest of days thanks to those ladies. I knew if I could do it, so could others. I not only wanted to help families avoid my ...
Keri developed severe preeclampsia at just 24 weeks pregnant and was forced to deliver her baby shortly thereafter.
Her baby girl Millie was extremely premature and weighed just 1 lb. 1 oz. She needed intensive medical care and Keri was by her side day and night.
A few days after Millie's birth, Keri set up a CaringBridge site to stay in touch with loved ones. "I had so many friends, co-workers and family members who wanted to know how to support me and who were asking for information about how Millie was doing," said Keri. "One hundred percent of my time and energy - emotional, mental and physical - was being spent on my baby and I had nothing left with which to reach out to people."
CaringBridge patient websites make is easy to share health news and receive support from everyone who cares. Using ...
Posted in Health Information on December 05, 2012 by Administrator
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 ...
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 ...
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, ...
Posted in Volunteer Happenings on September 04, 2012 by Administrator
What was your experience with preeclampsia?
I had severe preeclampsia (PE) and borderline HELLP syndrome with my first pregnancy at 35 weeks. I had warning signs as early as 30 weeks that I reported to my doctor, but he blew me off as a first time mom who didn't know what pregnancy was like. By the time I was diagnosed, I was in heart failure, cerebral edema, and had platelets low enough to qualify for class II HELLP. I was in really bad shape. I was transferred to another hospital, and the doctor there said we should pray the induction worked because a c-section would kill me. My first daughter was born mildly IUGR. She's almost 9 and doing well today.
I found a new doctor who monitored me closely for my second birth. I started showing the same early warning signs at 32 weeks, and was induced at 37 weeks with mild PE. My second daughter was also mildly IUGR and ...
Posted in Research on August 05, 2012 by Administrator
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 ...
Posted in Health Information on August 05, 2012 by Administrator
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, ...
Posted in Volunteer Happenings on August 03, 2012 by Administrator
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 ...
Posted in Heard on the Hill on July 02, 2012 by Administrator
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 ...
As the temperatures continue to rise this summer, we look south of the border to a grandmother making a difference all the way from the beaches of the Caribbean. For years Sandy Coder has collected sea glass from the beaches near her house in Mexico. After lots of practice drilling tiny holes in the glass, she created the first "Eva's Angel" in memory of her granddaughter that was lost prematurely at 22 weeks due to preeclampsia and HELLP in 2007 (
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 ...
Professors Chris Redman and Isabel Walker, co-authors of Pre-eclampsia: The Facts (Oxford University Press 1992) and co-founders of Action on Pre-eclampsia (APEC) in the UK, are seeking input from members of the Preeclampsia Foundation for their latest book, The Pre-eclampsia Survival Guide.
The new book, also co-authored by Joyce Cowan, a midwife who is Director of New Zealand APEC (NZAPEC), will be a comprehensive guide to pre-eclampsia for women and midwives. It will cover everything from historical theories to current treatments; from causation to detection; from prevention to management. It will be rooted very firmly in the real experiences of women who have suffered pre-eclampsia - and that's where you come in.
The authors are keen to illustrate their key points with real life case histories gathered from several different parts of the world. You could be part of this process by contributing to
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 ...
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.
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 ...
Posted in Heard on the Hill on April 04, 2012 by Administrator
During the week of March 26, 2012, the Supreme Court of the United States heard arguments about the constitutionality of the Patient Protection and Affordable Care Act (ACA), otherwise known as the Health Reform Law. As the Preeclampsia Foundation continues to advocate before state and federal policymakers on maternal health issues, we are watching closely to understand what affect the Court's decision(s) will have on women and their families.
The following is an overview of the key questions being considered by the Court after three days of debate - the longest hearing on a single case heard by the Supreme Court since 1966.
Should the law even be considered by the Court at this time - the Anti-Injunction Act? The court must determine whether the case can be decided now, or whether the court must wait until 2015, when the tax provisions of the law (individual mandate requiring individuals to purchase health insurance) go into effect. ...
The Promise Walk for Preeclampsia means something unique to each participant across the country... but this year for one young preeclampsia survivor, it means getting to see her artwork impact thousands!
Mya Detweiler, age 10, and her mother Dawn are no strangers to the Preeclampsia Foundation, or the Promise Walk. After experiencing severe preeclampsia and a harrowing premature delivery, Dawn turned her passion for the cause into action as a lead volunteer for the Foundation, including coordinating her own local Pennsylvania Promise Walk since the inaugural walks in 2005.
"Since she was little, Mya's been helping me stuff goodie bags and hand out ...