Articles
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. ...
Posted in Heard on the Hill on April 05, 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. ...
What was your experience with preeclampsia? I developed a life-threatening case of severe preeclampsia in 2002. My daughter was delivered by emergency C-section 2 ½ months early weighing 3 pounds and measuring 14 inches long. In my case, delivery did not relieve my symptoms and I spent time in the ICU with a pulmonary artery catheter in my neck, unable to see or hold my daughter for her first days of life. Even with extremely high blood pressure, incredible headaches and pulmonary edema, my doctors released me on two separate occasions. Each time I had to be re-admitted within hours, with slurred speech, vision problems, and tingling in limbs. In total, I remained in the hospital on magnesium sulfate for about three weeks as the preeclampsia continued postpartum. My daughter came home after 30 days in the NICU.
How aware were you about pre-e before/during your pregnancy? I was not familiar with preeclampsia other than maybe a brief ...
Posted in Research on April 04, 2012 by Administrator
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 ...
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 ...
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 ...
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 ...
In the words of 17th century English poet John Donne, "No man is an island"... and in the world of fundraising, this is doubly true. The incredible success of the Promise Walks each year is due in no small part to the ability of local walk coordinators and participants to gather their friends and families together and spread the infectious hope for the future that is at the fundamental core of the Promise Walk.
But how does a walk move from helping the Foundation fund a single local education campaign (around $2,000) all the way to funding an entire Vision Research Grant ($25,000)? The answer is the passion and drive of team work! So if you haven't already, start a team and read the following tips on making a big difference:
1) Have a Plan. Set a reasonable goal and make a list of people who would potentially support your efforts. For instance,
Posted in Volunteer Happenings on February 06, 2012 by Administrator
For Dallas-area volunteer Nicole Purnell, fundraising for the Preeclampsia Foundation is nothing new: she is currently in her fourth year as the Dallas-Ft. Worth Promise Walk Coordinator. So when she and her family decided to do another fundraiser for the Foundation, they decided to try something entirely different, and catered to their home state of Texas: a clay-shooting tournament to be held March 10.
"Of course, I realize that shooting clays is not an activity for everyone's taste, but this IS Texas after all!" explained Purnell. In organizing the event, she and her stepfather, who is co-hosting the tournament, realized that this would be a unique opportunity to pull in a different crowd than that of the Promise Walks for fundraising and awareness.
"My stepdad is a retired Navy SEAL and has many friends who enjoy clay shooting," Purnell said. "I had been wanting to do a clay shoot event for some time, and then, one day I got my daily Groupon ...
Posted in Volunteer Happenings on February 05, 2012 by Administrator
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 ...
Our seventh annual Saving Grace dinner gala fundraiser took place in Manhattan on the evening of Saturday, November 12. It was simply a wonderful evening, replete with raw emotion, inspirational stories, hope and gratitude. Together with The Foundation for America's Blood Centers, another worthy charity dedicated to saving the lives of mothers and babies, we reached a broad and extremely engaged audience of almost 500 guests. With the support of so many individuals and our event sponsors - Johnson & Johnson, Ortho Clinical Diagnostics, Merck, Abbott and many others - we grossed nearly $550,000 to support the vital missions of our organizations!
Our theme this ...
Some of the most important participants at the Promise Walks for Preeclampsia are healthcare providers who come out to support the Foundation. Many are community physicians and nurses who treat preeclampsia on a regular basis. The Promise Walk is an annual event held in numerous cities that allows the preeclampsia community to come together and mourn their losses, celebrate their hopes, and work together toward the common goal of raising money to fund research and create awareness.
Many Promise Walks invite healthcare providers to speak about their own professional experience with preeclampsia. That provider brings their own professional validation to the need for awareness and research, while giving attendees hope, knowing that there are medical professionals working diligently to solve the "preeclampsia puzzle."
So what causes these health care providers to be so passionate for the preeclampsia cause and to join our efforts at the Promise Walks? To provide ...
As a woman, you may feel that you are expected to do it all: career, family, community responsibilities. A high-risk pregnancy can make those responsibilities seem especially magnified as you try to square everything away before taking maternity leave or while on bed rest. For women facing a high-risk pregnancy (whether because of a previous preeclampsia experience or for other concerns) and caught up in the "Super Woman" mentality, you can lose sight of your own needs, goals, and most of all health. It can be challenging to make time to take care of you, a fact to which many preeclampsia survivors who missed the warning signs will attest. The day can slip away without taking a break to assess your physical and mental well-being. Nevertheless, for a patient who may face potential pregnancy complications, focusing on your care should be paramount!
Posted in Heard on the Hill on October 05, 2011 by Administrator
The Foundation is closely tracking and providing perspective to Congressional efforts related to maternal and neonatal health and well-being, especially as they may impact preeclampsia awareness and related care. Two pieces of legislation of interest are the PREEMIE (Prematurity Research Expansion and Education) Reauthorization Act and the Birth Defects Prevention, Risk Reduction and Awareness Act.
The PREEMIE Reauthorization Act, sponsored by Reps. Leonard Lance (R-NJ), Anna G. Eshoo (D-CA) and Senators Lamar Alexander (R-TN) and Michael Bennet (D-CO), would expand research, education and intervention activities as they relate to preterm birth. The legislation will also work to promote the use of evidence-based standards of care for pregnant women. The original PREEMIE Act was signed into law in December 2006, and the programs supported through the law at the Centers for Disease Control and Prevention and other federal agencies and subsequent resources provided to ...
Posted in Media on October 05, 2011 by Administrator
I have always been a fan of the movies; I enjoy escaping into a dark theater to watch a story unfold before me on the big screen. In fact, I am sitting down to write this after enjoying a trip to the movies with my family to see Dolphin Tale, a terrific story that had my six-year-old daughter both enthralled and teary-eyed when she saw the hurt dolphin who we would come to know as Winter. I hope some of the passion and determination exhibited by Sawyer Nelson (played by Nathan Gamble) sunk in with her and she will someday find her own calling (other than Barbies!) that inspires her in a similarly compassionate and blindly hopeful way.
True stories can be more mind-blowing to an audience and more captivating to Hollywood filmmakers than fiction. These films - and their stories - in turn, can motivate others to act in inspired ways. In particular, big screen messages of medical empowerment can have an impact on audiences. The real life inspiration for the film Lorenzo's ...
Are you someone who has faced the loss of someone you love because of a hypertensive disorder of pregnancy? Perhaps it was your child or your spouse, a close friend or relative. Whatever the relationship, aside from the pain of the loss, you may also be confronting feelings of guilt or shame.
You may wonder 'Why did I survive and my child did not?', or 'Why did my child survive and my friend's child perish when we both went through a similar circumstance?' You may even feel responsible for the death by thinking there must have been something you could have done to change the outcome. Processing these feelings can be isolating, hurtful and leave you wondering how to go on with life. This is known as survivor guilt.
As devastating as your situation may ...
Posted in Volunteer Happenings on September 05, 2011 by Administrator
1. What was your experience with preeclampsia? My partner and I had tried for a couple of years to conceive our first child, and finally succeeded in 2009. I felt fabulous during the pregnancy, except that I developed an annoying cough that got more frequent and more productive as the months went on. I mentioned it a hundred times to my doctor, but he always shrugged it off, saying pregnant women often have excess mucus. At 7 months along, I expressed concern to my doctor that I had only gained 12 pounds, but again, he said it was not a problem. Based on my gut instinct that something wasn't right, I insisted on an ultrasound that day, which showed my son was severely growth restricted. He was delivered that night (at 31 weeks) via c-section. He weighed 1 lb 15 oz. We named him Mack. Despite showing all signs of doing great for over a week, Mack developed an infection in the hospital and died when he was 10 days old. I was later diagnosed with postpartum preeclampsia (high ...
Posted in Research on September 01, 2011 by Administrator
Filtering the Factors A new therapy may be developed for very preterm preeclampsia patients, if the results of a small pilot study are confirmed in a larger trial. Researchers have been looking for a safe way to prolong pregnancy by at least the 48 hours needed to allow steroid shots to mature fetal lungs. (Each safe extra day in utero eliminates two or three days in NICU, and means higher survival rates for many of the babies affected by preeclampsia.)
In 2003 a paper published by Dr. Ananth Karumanchi in the Journal of Clinical Investigation presented evidence that a protein named soluble fms-like tyrosine kinase (sFlt-1) caused many of the symptoms in preeclampsia. Karumanchi studied the placentas from preeclamptic pregnancies and found that they were producing far more sFlt-1 than the placentas from normal pregnancies. The protein binds to another protein and compromises the repair of blood vessels, leading to many of the symptoms such as ...
Losing a child is one of the hardest life experiences anyone can endure and can be difficult for other to understand. Add in the trauma of preeclampsia and your emotional shoulders may not be big enough. Who can you turn to that really understands everything you have gone through? The Preeclampsia Foundation offers several avenues of support. The Patient Support Network is made up of volunteer members that have each lost a child. Each member has a different experience and viewpoint that enables the network to offer specific support based on each family's circumstances. Since its creation in February, the group has responded to 13 families that have recently lost a baby due to preeclampsia. Through condolence cards, phone calls and emails, the group listens and walks besides families during the darkest days of their grief journey. To contact the Patient Support network, simply call our toll-free line at 800-665-9341 or email
By Executive Director Eleni Tsigas
How do you thoughtfully make a decision about medical matters? Especially when there is no clearly prescribed course of action supported by strong research, professional organizations, and universally accepted guidelines? For the majority of us who don't have medical degrees, it's easy to get overwhelmed by the amount of information we are expected to know as a consumer of health care. So, how can you discuss or evaluate potential preeclampsia interventions with your doctor?
Use the BRA formula: B for Benefit: What's the potential benefit of trying to prevent preeclampsia with low dose aspirin/Lovenox/Atenolol/vitamin D or other interventions -- all with varying degrees of evidence? Could this intervention prevent preeclampsia, delay its onset, or lower your chances of getting it? And when you consider those benefits, make sure you understand the difference between having a 50 percent reduction and a ...
|