Posted on in Preeclampsia Information

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 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.

 

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Our Foundation has a growing mission to emphasize the need for monitoring and care for hypertensive moms postpartum for physical AND emotional needs. We asked our Facebook Followers these questions, in the wake of THE DAILY BEAST's recent article: "Why Are America's Postpartum Practices So Rough on New Mothers?"

  • Are the US's postpartum practices too trying on new moms?
  • What did you think of your postpartum experience?
  • What would you have done the same or differently?

We received multiple comments on Facebook and then set up a discussion in the Community Forum on our website. Many of you had both good and bad experiences during your postpartum period. For example:

I was lucky to have my mother in law's support for two months. Severe postpartum PE took nearly all the wind out of my sails.
I spent the 60 days after an emergency c-section under general anesthesia going back and forth to the NICU to visit my child. Restful, recuperative--no. So stressful.

We heard reports of going home from the hospital after preeclampsia and delivery only to have to return days later with postpartum preeclampsia. We heard reports of blood pressure becoming a chronic problem after delivery and concern over lifetime blood pressure challenges. And, there were reports of grief and depression. For example:

At my 2-week postpartum checkup, my doctor said everything looked fine. The very next day I was in the ER with kidney failure and congestive heart failure.

What's not fair is losing my baby due to severe preeclampsia and then not only do I not have a baby here with me, but now I have blood pressure issues. Constant reminder of my baby being gone because of preeclampsia. On top of high blood pressure has been everlasting depression.

One thing we know from the tens of thousands of posts made by participants of our Community Forum is that you really appreciate the support of others who have had similar experiences. Another thing we know is that you like the advice of other moms, not just medical experts. We recommend you visit the conversations in Ask the Experienced, and share your postpartum experience at Postpartum Experiences in the US: Are they too trying?
 
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This article appeared in the May 2013 edition of PRE-EMPT NEWS.

On May 27, 2013, PRE-EMPT in collaboration with MCHIP, organized “Preeclampsia 2013: Global Symposium” as a satellite event to the Women Deliver conference in Kuala Lumpur, Malaysia.

We would like to thank the Sabrina’s Foundation for their generous support in making this symposium possible. The symposium was designed for ministers of health, health managers and administrators, doctors, pharmacists, midwives, nurses, politicians and patient advocates committed to decreasing the global burden of maternal and perinatal mortality and morbidity related to pre-ecalampsia and eclampsia. Interactive panel and group activities included discussion of the WHO preeclampsia and eclampsia recommendations, implementation strategies, global commodity issues, quality indicators and current research initiatives.

In addition to these discussions, Marshall Ignibosa Ukpoma from Nigeria addressed the symposium to provide a family perspective on losing his wife and child to preeclampsia. His book “283 days after I do” is available on Kindle and an element of his advocacy and outreach efforts to raise awareness about preeclampsia.

The first panel focused on global approach, comprising of Peter von Dadelszen, Matthews Mathai, Jeffrey Smith and Hillary Bracken, included highlights on PRE-EMPT research, WHO Knowledge Translation, program implementations initiatives and preeclampsia and eclampsia quality indicators. Another qualitative focus was provided by Asif Raza Khowaja and Marianne Vidler on the decisionmaking dynamics and determinants of care seeking for preeclampsia community perspective in Pakistan and community perspectives of preeclampsia and eclampsia in low and middle income countries, respectively.

The second panel was focused on commodity supplies for preeclampsia: global challenges and solutions. Hans Vemer presented on the global initiatives for commodities for preeclampsia while Lily Dwerani presented on the issues related to MgSO4. In the latter half of the panel, Hans Vemer and Deborah Armbruster led a discussion on addressing some critical questions around the formulation and standardization of MgSO4.

In addition to two panel discussions, the symposium also had three problem solving stations focused on: 1) mild and severe preeclampsia: monitoring and expectant care led by MrutunjayaBellad and Peter von Dadelszen; 2) advocacy and leadership for a global approach, led by Tabassum Firoz; and 4) MgSO4 and antihypertensives: commodity management and appropriate use, led by Hans Vemer and Jeffrey Smith. The symposium had participants from over fifteen different organizations and 13 different countries. We thank all our partners and collaborators who helped bring preeclampsia into the discussion at this conference through this symposium.

PRE-EMPT at Women Deliver 2013: A recap

The Women Deliver conference was held in Kuala Lumpur, Malaysia between May 28-30, 2013. The conference included over 4500 participants from 139 countries and over 2200 organizations. Also, Jeffrey Smith, Deborah Armbruster, and Peter von Dadelszen and Sadaf Khan (PATH) led a session on the latest evidence on maternal health and where it is leading us. The session received an overwhelming response from the Women Deliver community. Many PRE-EMPT partners among several of our collaborators actively participated in presenting various sessions at the Women Deliver conference including Ana Langer, Zulfiqar Bhutta, Metin Gulmezoglu, Beverly Winikoff, France Donnay and Matthews Mathai.

 
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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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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 singer, 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.

 
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The Preeclampsia Registry

    The Preeclampsia Registry is a "Living Database" bringing together those affected, their family members, and researchers to advance knowledge and discover preventions and treatments for preeclampsia, HELLP syndrome, and related hypertensive disorders of pregnancy.

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