Margaret Meade once said, "Never doubt what a small committed group of citizens can do to change the world. Indeed, it is the only thing that has."
At the Preeclampsia Foundation, we like to say, "Never doubt what a large cohort of preeclampsia survivors can do to catalyze research. Indeed, it is the only thing that will."
Welcome to our Special Research Edition of Expectations.
I've heard thousands of stories with poor outcomes that started with "If only I had known" or "If only I had known and pushed harder to be taken seriously." What women wanted to know were the signs and symptoms of preeclampsia. With that information, they would have immediately responded to that unrelenting headache or the searing pain running up over the shoulder. They would have known to push back, if their complaints weren't taken seriously, with a request to be have their blood pressure checked, be seen by an expert, or have blood drawn for ...
Posted in Volunteer Happenings on January 30, 2013 by Website
Terrell and Kimberly Smith began 2012 with joy and anticipation as they planned for the arrival of their baby girl. But on March 12, they received the worst news of their lives: Kimberly's blood pressure hit 200/100 and her vitals were rapidly deteriorating. Their baby girl, Lauren Kelly, was gone at just 22 weeks due to severe preeclampsia.
The Smiths refused to let their tragedy go unheard: Kimberly reached out to the Preeclampsia Foundation and asked what she could do.
"South Carolina has never held a Promise Walk before, and even in conversations with various public health professionals, pregnant women, and women impacted by preeclampsia, many had not heard of the Preeclampsia Foundation," explained Smith. So she decided her goal was to bring awareness and support to the "wonderful work the Foundation is doing throughout our nation" by bringing the Promise Walk to her home state.
She has since partnered with local health care providers throughout the ...
Posted in Volunteer Happenings on January 10, 2013 by Website
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 ...
Posted in Volunteer Happenings on December 05, 2012 by Website
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 ...
Posted in Volunteer Happenings on September 30, 2012 by Website
1. What was your experience with preeclampsia?
I developed HELLP Syndrome in 2009. Not knowing the symptoms of HELLP delayed my response to getting help faster. I went to the ER after three days of right upper quadrant pain (which I was told by the doctor on call that it was probably my gall bladder even though I was on bed rest for high blood pressure), difficulty breathing, and a sense of just not feeling well. I was told by the Labor and Delivery nurse I had made it just in time. When I arrived my platelets were dangerously low, my liver was enlarged and my blood pressure was high. They feared I was going to bleed out during delivery and prepped me for a transfusion. There is no scarier feeling than feeling like you might die during what is supposed to be the happiest time in your life. I delivered my son, Cooper, at 36 weeks. He was only 4lbs 13 oz. Although he was tiny and his platelets were low, he miraculously did not have to go into the NICU. We ...
Posted in Health Information on September 04, 2012 by Website
A recent Preeclampsia Foundation survey reveals that most women feel that books that provide complete and accurate information about preeclampsia would help them approach their pregnancies as empowered patients. The survey, conducted as a follow-up to the May release of the Preeclampsia Foundation's Report on the Top 10 Pregnancy Books, asked women about the pregnancy books they used during their pregnancies and about their feelings regarding the preeclampsia information contained in those books.
All respondents were entered into a contest to receive a signed copy of one of the top 3 books and a Preeclampsia Foundation gift basket. Congratulations go to Melissa S., Teri P., and Laura R. for winning the random drawing!
Not surprisingly, the majority of respondents (69%) reported that they relied on the bestselling What to Expect When You're Expecting by Heidi Murkoff and Sharon Mazel ...
Posted in Volunteer Happenings on September 04, 2012 by Website
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 Website
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 Website
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 Website
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 Volunteer Happenings on July 02, 2012 by Website
This month, we highlight the volunteer efforts of Stacy Vallely, whose fundraising team "Ty's Team" raised an astonishing $10,300 for the Boston Promise Walk! Stacy raised $5850 herself, making her the highest individual fundraiser of all the Promise Walk participants. We asked Stacy a couple questions about her involvement with the foundation.
1. What was your experience with preeclampsia?
I started to swell pretty early on. I remember thinking that I couldn't believe that I had to take my rings off before the 3rd trimester. Then when I started to feel funny. I called my midwife and expressed concerns about preeclampsia because of the swelling. She asked if I had any headaches? No. Any vision changes? No. She told me that they don't usually worry about preeclampsia until 36 weeks and I was just 26 weeks. My blood pressure at our last appointment was fine, so I should "put my feet up and I will see her in a little ...
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 (
Posted in Volunteer Happenings on June 05, 2012 by Website
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 ...
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 ...
Posted in Volunteer Happenings on March 05, 2012 by Website
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 Website
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 04, 2012 by Website
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 ...
In June, Americans celebrate Father's Day, a holiday that can be bittersweet for preeclampsia patients and their families, many of whom have experienced recent and past losses or endured harrowing scares. The Foundation often describes survivors of preeclampsia as members of "the Silent Club," for the way that such a devastating pregnancy experience can be both silent and isolating. Nevertheless, there is a group whose voice we hear far less when discussing our pregnancy experiences: our husbands, significant others and the fathers and grandfathers of our children.
These men often become the "silent-er" club, watching helplessly and recovering quietly as the blessed event they expected their wives' pregnancies to be turns out quite different. But many of them go on to stand next to us when we throw ourselves into volunteering for the cause, contributing their own expertise and perspective, and even stepping up to become leaders themselves as several members of our Board ...