LETTER FROM THE EXECUTIVE DIRECTOR
Unless you have been completely untethered from all media this week, you know that a popular character on British historical drama Downton Abbey died from postpartum eclampsia, shocking and devastating over 8 million devoted viewers. In her death, Lady Sybil became our unwitting celebrity spokesperson!
With advance knowledge of this surprising plot element, thanks to our sister organization in the UK where the show aired last fall, our team developed a simple but savvy public relations campaign, including an Op-Ed piece in the Daily Beast, a press release, a newly released Health Information article, and social media strategy centered around Twitter and Facebook. Our ability to anticipate the firestorm of attention Lady Sybil's death allowed us to ride the tsunami of national and major market media coverage, Twitter, Facebook and blogs that discussed the episode after its Sunday night airing on PBS.
When I asked our resident social media guru, Laney Poye, what she thought was the most important result of this campaign, she said, "It was heartening to see the Foundation positioned by other influential organizations as the go-to public resource for more information about preeclampsia and eclampsia. For example, groups like the American Public Health Association and Masterpiece Theater PBS referenced the Preeclampsia Foundation to assist their hundreds of thousands of followers in understanding the medical reality of the fictional show."
She continued, "We had more than 400 'retweets' of our original Twitter content related to Downton Abbey and had over 22,000 new website visitors in just three days."
Although many disgruntled fans who missed the show complained of 'spoilers' in the headlines the next morning, we were gratified that an even larger audience responded with heartfelt personal accounts, sometimes reawakened grief, but mostly enlightened gratitude for our timely, credible and informative perspective. Our work to be in front of the conversation on preeclampsia and eclampsia shifted the worldview of hundreds of thousands of people as they now know that this common complication of pregnancy, 100 years later, is still taking the lives of mothers and babies and seriously threatening many more. And they know that there's something that can be done about it. We need to empower women with knowledge, advocate for a patient-provider partnership, and improve health care responses - all part of the Foundation's current assignments, and clearly evident in the social media dialogue over the past few days.
"The fact is that a POPULAR TV show (on both sides of the pond) used preeclampsia ACCURATELY as a plot point is actually extremely important. Think about how many people now know about it who may not have even heard of it before. It brings the information to light."
"The mother of my godson died from preeclampsia shortly after she gave birth in 2003. It manifested atypically, and she was actually admitted to the hospital by her astute eye doctor after her OB-GYN blew her off (it was labor day weekend - the doc told her she was overreacting). 3 days later she was dead. So, yeah...it still happens."
"Dumb article? I think not. I wish every day I had been made aware of the signs and symptoms of pre-eclampsia. Don't just assume your care provider has it under control. Educate yourself."
I watched the reaction to our media campaign with amusement and pride. Never before had we so successfully leveraged a fictional event to draw massive public concern for our cause. I know that it will be short lived, even as responses to real life tragedies often are. But when the sound and fury dies down, the Preeclampsia Foundation will still be here, telling our stories and inspiring researchers, policy makers, women and their care providers to action. And I'm confident in and grateful to our mission partners - like my Op-Ed co-author Christine Morton from CMQCC - who will help lead the way.
I'd much rather have my emotions sucker-punched by the death of a fictional character than by the loss of a loved one to the many real-life families who turn to us for support and information. It is for you that we continue our good, hard, even sometimes thankless, work. Please, if you haven't yet, consider joining with us as a volunteer, donor, advocate or mission partner.
GUEST BLOG BY REGINA HOLLIDAY
"Both of Them" depicts a husband's pain when asked to choose between his wife's or baby's life.
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?"
"Birth of an e-Patient" tells a couple's story of moving from lack of information (with a poor outcome) to becoming enabled and empowered, largely through support and information from the Preeclampsia Foundation (with a joyous outcome).
There is a patient art movement spreading around the world. It is called The Walking Gallery of Healthcare
. Virtually every day at medical conferences and meetings, individuals are attending presentations or giving lectures while wearing business suits. That is not unusual; but these suits have paintings on them. On the back of every garment is the story of a patient. Some of these stories are joyous: a mother survives cancer
and is able to raise her infant son, or a woman has a second pregnancy
without complication. In some stories a child is lost due to a heart condition
or to preeclampsia
There are 17 artists currently painting in the gallery and 200 people walking around with paintings on their backs
. For more information please contact me
on Twitter. We would love to have you join us and show the power of the patient story.
Guest blogger Regina Holliday's husband died of kidney cancer in 2009 after weeks of hospitalization in multiple locations. Regina and her husband had problems with care coordination, having access to his own medical records, and lack of compassion from the medical professionals. After her husband's death, Regina started painting murals to depict individuals' experiences with health care, and hasn't stopped.
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:
- I had high blood pressure during pregnancy. Are there steps I should be taking now to monitor my heart health?
- I had a fetal growth restriction complication or delivered a preterm baby. What should I be doing for my best cardiovascular health?
- What risk factors (unrelated to pregnancy) do I have for cardiovascular disease, such as diet, family history, etc.?
- Do any of my test results indicate risk factors for heart disease, such as high cholesterol?
- Do my overall risk factors or risk factors related to pregnancy suggest that I should be referred to a cardiologist?
- 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.
GUEST BLOG BY DR. LINDA BURKE-GALLOWAY
When we think about maternal deaths, visions of thin, malnourished women lying on cots in thatched-roof cots immediately come to mind, when in fact they occur right in our backyard. In the U.S., preeclampsia is one of the four most common reasons for maternal death. On an average, there is approximately 1 maternal death for every 100,000 births, but for African American women, this number triples. African American women are three times more likely to die from preeclampsia and other childbirth-related issues and no one knows why.
As our society becomes more culturally diverse, this problem will indirectly affect all of us. Our daughters and granddaughters may no longer look like us ethnically but carry genes that places them at risks for complications associated with a particular race. While we attempt to unravel the mystery of what causes preeclampsia, an equally mystifying dilemma is to determine why are African American women more at risk for developing and then dying from preeclampsia than anyone else? Older schools of thought attempted to use socioeconomic status as a reason to explain the problem, but it doesn't hold up under statistical analysis. Let's take my sorority sister, Dawn, as an example.
Dawn did not live in the ghetto. She didn't use drugs. She didn't have high blood pressure and she wasn't morbidly obese. She was the oldest of four children who grew up in my hometown of Queens, New York, graduated from college and became an urban radio host , first in Buffalo and then in Orlando. While in Buffalo, she became extremely popular and had listeners as far away as Toronto.
Dawn was 31 years old when she married and became pregnant. Because of her notoriety as a DJ, her pregnancy and death made the local news. She was 32 weeks and had been on bedrest. Her blood pressure became extremely high and the baby was delivered. The day after her delivery, she called her pastor with a request for prayer. But by the time he arrived that evening, she had had a stroke, lapsed into a coma, and died. Her baby lived, but her young husband became an instant widower. Her story, while uncommon, is not unheard of.
The actress and dancer, Vanessa Williams and her mother, Helen, describe the death of her paternal grandmother from preeclampsia in their book, If You Only Knew.
Another African American woman suffered a "near miss" with her preeclampsia, but lived to tell her story on her popular blog. Angela Burgin Logan is a former Kraft Foods marketer and an editor for Lifetime TV. When she became pregnant with her first child, her complaints of weight gain, fainting spells and headaches went unheeded by her obstetrician. Angela ultimately had preeclampsia and cardiomyopathy that almost killed her. She never saw it coming but was so grateful to ultimately be alive that she and her husband produced a movie entitled Breathe.
When African American women have preeclampsia, its effects are severe and it presents earlier than in women of other races. We don't know why. More research is certainly needed in this area but in the meantime, African American women should be screened for potential high-risk conditions and be managed as if they will develop preeclampsia, especially if it's their first pregnancy. If that had happened, my sorority sister Dawn, might be alive today.
Linda Burke-Galloway, MD, MS, FACOG is the author of "The Smart Mother's Guide to a Better Pregnancy: How to minimize risks, avoid complications, and have a healthy baby". She is an author, speaker, Ob-Gyn patient safety and risk management expert.
THE PROMISE WALK FOR PREECLAMPSIA
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 state and used her passion and the memory of her little girl to start making a difference in the health outcomes for other women. Kimberly also has a robust social media presence: not a day goes by that Kimberly isn't seen tweeting life-saving preeclampsia tips (check her out @MrsKimSmith and @SCPromiseWalk).
Although the first Columbia Promise Walk is only a few months away, Kimberly is already excited for what is shaping up to be an amazing event, with fun kid zone activities, a beautiful survivor and memorial storytime, music, and lots of activities with community partners. Ultimately, she hopes that her event can help give others who have shared similar experience the hope that they are not alone.
The first Columbia Promise Walk for Preeclampsia will be on Saturday, May 18, 2013 at Riverfront Park in Columbia, South Carolina. Volunteers, sponsors and walkers welcome!
"I am thanking @Preeclampsia for all the support since my life-changing experience with postpartum
eclampsia. Thankful every day
for being a survivor."
"Thank you @Preeclampsia for being there when I've needed you over the last 10 years."
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