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February Volunteer Profile

Kim Timer, Volunteer Beat Editor

What was your experience with preeclampsia?

I had a normal, routine pregnancy with my son, who was due March 28, 2007, up until week 31. At that time, I had gone to my normal doctor’s appointment and they told me I had gained over 10 pounds in a week and told me my blood pressure was elevated, but after stabilizing my blood pressure at the hospital, I was sent home. The night of February 4, 2007, I was experiencing what I thought to be gas pains but I was able to get to sleep. The morning of February 5, 2007, I woke up bleeding and my husband rushed me to the hospital. My son, Liam, was born at 32 weeks and taken to the NICU. Between the abruption and the preeclampsia and HELLP syndrome I would later discover I had, my organs began to shut down. I was put in a medically induced coma on a ventilator. I received 18 pints of blood and numerous transfusions and I required kidney dialysis. I was able to come out of the coma after 15 days. Some sympathetic ICU nurses took me to meet my son on February 20, 2007. With my son’s 4th birthday fast approaching, I am happy to say we are both doing fine now.

Why do you volunteer for the Preeclampsia Foundation?

Having Liam the way I did was such a hard, crazy experience. I knew nothing about preeclampsia or HELLP syndrome, except the minor mention of preeclampsia at my 31-week check up. Plus, I didn’t know anyone who had these conditions before. About a year and a half after he was born, I decided to look for some answers. It wasn’t until I read my own medical records that I saw the HELLP syndrome and preeclampsia diagnoses. I went searching for some answers and some support. I found the Preeclampsia Foundation. I spent a fair amount of time on the website, mostly as an observer. I thought if I would have had any of that information before Liam was born, I would have known to take my symptoms more seriously. I wanted to volunteer to help make a difference. Plus, the Preeclampsia Foundation was someplace I felt I could go where people understood me. I wanted to help the Foundation continue to reach people like me.

How aware were you about preeclampsia before/during your pregnancy?

I was not aware of it at all. I had heard the name before but thought that was something that happened to other people. When the doctor told me I had preeclampsia, he did not act like it was a big deal. I had no idea what was happening or what warning signs I should have been looking for.

What goals and dreams do you have for your involvement with the Foundation?

If I can help the Foundation reach just one person like me, my volunteer efforts will be worth it. I just hope that we can get the warning signs out to people ahead of time, so women can be educated about preeclampsia and HELLP syndrome. And for the women like me who feel they have no one who understands, I hope we can continue to provide a place with information and forums that connect people.

What has been your most gratifying moment as a Foundation volunteer?

I am not sure I have just one moment, but I think hearing other people’s stories and how they got to the Foundation has been very special to me. In addition, being involved with the newsletter when we went to an electronic format was a great experience. I just think of how many more people we are able to educate and reach with the monthly electronic newsletter format.

 
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Posted on in Preeclampsia Information

I don't like to spend too much time looking backwards, but every bit of progress deserves to be celebrated. On Feb. 15, the American Heart Association released updated guidelines for women's heart disease and, after years of our advocating for recognizing the role of preeclampsia, it was finally included. Health care providers are encouraged to collect information about a woman's pregnancy history to better understand her risk of heart disease. We think more guidance is needed, but it's a great start!

Thanks to everybody who spent a few minutes registering their thoughts about our advocacy agenda in last month's survey. Creating a strong advocacy voice for preeclampsia in the halls of Congress and within the federal agencies is a multi-step process. Great strides were made in February toward achieving this goal, including the discovery that over 17 million dollars are being spent at the NIH on preeclampsia across nine Institutes.

I had the pleasure of spending several days in San Francisco last month for the Society for Maternal Fetal Medicine Annual Meeting where we announced our call for applications for the 2011 Vision Grants, including a new category for health services research. Please help us publicize the availability of this grant funding by sharing this link: http://bit.ly/fxRQJm

It's been fascinating to watch the evolution of the preeclampsia research presented at this annual meeting, including a fivefold increase in the shear volume of preeclampsia-related abstracts. Several of the researchers we funded presented their findings, such as Drs. You and Facco. Less noteworthy at this year's conference was the dearth of preeclampsia research presenting positive results; many of the oral presentations presented negative findings which are necessary but a bit disheartening. It's also been validating to meet more clinicians who know the Foundation and routinely use us and our materials as a resource for their patients. We consider these OB specialists partners in our mission and appreciate that the respect is increasingly mutual.

Since March is national women's history month (like we only need a month!), I leave you with this clarion call: "Never underestimate the power of mothers' voices (and the families who love them) coming together to make a difference!"

 
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Spring is near, and many areas of the country are ready to shake off the snow and welcome the warmer weather. Outdoor gatherings such as garden tours, Easter parades, arts festivals and baby item sales seem to appear everywhere you go. Could these be opportunities in your community for distributing preeclampsia materials at an information stand? Email Johanna Aiken, Director of Patient Education to learn more about distributing brochures and other patient education materials at your local events.

 

There are also a variety of fresh ways you can use the season to benefit the Foundation through fundraising: check out the brand new "Top Ten Spring Fundraising Ideas" for some inspiration. Visit the Events page to see how members in Texas, Iowa, and California have already committed to using spring to refresh their volunteer efforts and inspire local group development. Promise Walk teams are also gearing up for their area walks by hosting sports tournaments, sales, and dinner nights to boost local participation and contributions.

 

Spring Break can also be a great time for students to get involved in making a difference in their local community. Candy sales, flower sales, bicycle or motorcycle rides can rally support for critical awareness and fundraising, and is a great way to get those volunteer hours! Have an idea for a fundraising and awareness project or event in your area? Contact Director of Local Fundraising Dawn Detweiler for support and guidelines.

 

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If you've had a hypertensive disorder of pregnancy in a prior pregnancy, deadling with a subsequent pregnancy can be emotionally difficult. Preparation is the key to a positive emotional and physical experience, with the best possible outcome.

Learn: Ask your health care professional for a write-up of your prior pregnancy. Focus on what happened to your body and how your symptoms manifested. Have a preconception check up with a specialist who can test for underlying conditions such as clotting disorders or chronic hypertension. The more you know about what happened to you, the more you can be aware of signs and symptoms should they repeat themselves. Read about all the various signs and symptoms in case preeclampsia presents itself again, but perhaps differently.

Rally Your Support Group: Every pregnancy ends with Mom needing additional help. Add a pregnancy complication and you may wish for a small army at your disposal. Line up the folks you know you can count on and trust to fulfill certain duties while you cannot and keep them informed of your health status. Not only will they be better equipped to help you, but sometimes it takes another perspective to see things - like changes in our appearance that may signal key symptoms.

Create a Sanctuary: If bed rest is in your future, start preparing the area in which you plan to spend the majority of that time. De-clutter it as much as possible and leave only the things that let your mind and body relax. Perhaps spruce the room up with a calming new paint job or some aromatherapy candles. Start collecting the things you know will help get you through the time, too - like books, movies, music, crafting supplies, a laptop computer, etc.

Be Proactive: Take control of the things you can - your diet, routinue, stress levels, etc. Get yourself in the best possible physical condition before you get pregnant, including lowering your BMI (body mass index) if you are overweight. After you're pregnant, self monitoring by using a portable blood pressure cuff and keeping a journal of your symptoms can help your health care provider by providing trends he/she would not otherwise see during your regular visits. But be careful, obsessing over every BP reading or pain can also be problematic. Your health care provider can guide you on how much information to gather.

Have an Emergency Plan: Know what you will do if your symptoms suddenly become severe. Do you live alone? Do you have access to emergency services like 911? What if you are out shopping or at work and become incapacitated? If you have other children at home, do you have childcare providers on standby? Make a list of all necessary numbers that anyone could use during an emergency and post them in your house, in your vehicle and carry them on your person. A medical ID bracelet or necklace is a great way to ensure this info is always with you. At home, program your speed dial with emergency numbers or utilize an alarm system with emergency medical services.

Stay Positive: History doesn't always repeat itself. Although a previous history of preeclampsia is the largest risk factor for getting it, you still have a greater chance of NOT getting it again. Your attitude may be the only thing left in your control at some point in the pregnancy, so make sure you're making every effort to enjoy this time and focus on the outcome - a healthy baby.

In the end, there are no guarantees to whether or not you will develop a hypertensive disorder of pregnancy like preeclampsia. But getting healthier, knowing your history, knowing yourself, knowing the facts and being prepared can help ensure that you've done everything possible to sway the odds of a safe and healthy outcome in your favor.

 
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Have you ever been standing in the checkout line and had the urge to tell the pregnant woman in front of you about preeclampsia? If you follow these three easy steps, you just might be able to help save a life!

Initially, approach the conversation with a flattering question, "Congratulations, when are you due?" then lead in with "Is this your first baby?" Most women love to dote on the impending arrival of their baby. Humor is also a great approach. For example, "You look incredible! When I was in my last trimester I was so swollen from preeclampsia, I couldn't see my own feet." Little conversational volleys get the dialogue flowing in a comfortable direction.

The second step is to segue into your story. When you share a snippet of your life or pregnancy experience, it can provide a perfect opportunity to explain preeclampsia. Newsletter writer Laura Dale transitions into her story by saying, "I have a healthy 3 year old son. He's our miracle baby, as he was born premature as a result of being induced early due to preeclampsia," and says she has never had a mom walk away at this point in the exchange. This is the hook, line, and sinker portion of the conversation.

Many times, women will say, "What is preeclampsia, I have never heard of it?" or "My doctor mentioned preeclampsia; I didn't realize it was so dangerous?" This is your golden opportunity to begin step three of the conversation: share the information, facts and direct them to the Preeclampsia Foundation website for additional help. By sharing this valuable information you are making a promise for tomorrow - a promise for healthier outcomes for other mothers and babies.

 
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One of the hallmarks of preeclampsia is its rapid progression: one minute you may be feeling what seems like the normal discomfort of pregnancy, and the next you may be fighting for your life.

Women who have experienced this rapid decline in health due to a hypertensive disorder of pregnancy are often overwhelmed not only by their symptoms but by the extreme nature of the measures taken to preserve their lives and the lives of their babies.

This onslaught of unexpected activity is centered around one of the most life-changing events a woman will encounter - giving birth. The routine delivery that was once on the horizon is shattered into an array of possible outcomes, many of them negative.

But what happens after the monitors are turned off and the IV's are removed? Families are left to pick up the pieces of the preeclampsia experience and try to fit them into a story that makes sense. Talking over the details can be quite painful, confusing, and unsettling. You may also have unresolved anger stemming from the experience.

During this emotional time it is important to lean on the people who love you and let them help. Women who are recovering from preeclampsia may feel like they can handle everyday tasks, but physically they may still be left with lingering limitations. Take it slow and follow doctor's orders.

Start asking questions, if you haven't already. You may find yourself combing through the internet and books for more information, and perhaps that is what brought you to the Preeclampsia Foundation. Join the forum to connect with other families who are going through similar situations. Schedule some time with your physician to discuss what happened and get a copy of your records.

Take time to grieve. Grieving doesn't necessarily have to be precipitated by a loss. Suffering a life threatening condition can leave both emotional and physical scars. You may feel guilty for not carrying your baby to term, or for getting sick, or for not knowing to get help sooner. Whatever the case may be, allow the grieving process to take place and seek assistance if it's too much to bear on your own. Listen to those who may recognize your need for help before you do.

Take time to identify and appreciate any positive outcomes of your experience. Thank those who were there to support you. Make a commitment to yourself to do everything possible to restore your emotional and physical self.

While nothing can change the past, we must each find a way to move forward from a high-risk experience. Whether it is through active support to raise awareness at a local or national level, or a quiet telling of your story to a new friend, choosing to share your experience may not only help heal your own heart, but it may also help save another.

 
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More than 50 comments emerged from a recent Facebook post to describe how preeclampsia changed the way you live. Women who had delivered prematurely, lost their baby, or lost their adult daughters to the disease responded with various tales about the shortness of life and how nothing should be taken for granted. Together, the posts tell a story of how people learn to live again after being struck by preeclampsia. Many families are given a lifetime of lessons in one fell swoop - complete and staggering and with instant illumination, whereas others acquire the same lessons on a small scale through a series of lifelong events that gradually come together like a mosaic of many pieces. Respondents commented on how their experience "put things in perspective" and how they have a "new outlook on life."

Not surprisingly, for many, it was an eye-opening experience that called attention to the fragility of human existence. One respondent commented, "Now, I see the truth and I am not exempt from the pain in the world that babies are born prematurely, regardless of whether or not the mother smoked or used illicit drugs, and mothers still die in childbirth."

Many still mourn the loss of a normal pregnancy, a feeling heightened by the decision of many to end their plans for having additional children and growing their family. Along with that grief come a wide variety of emotions and conditions ranging from anger and bitterness to gratitude and enhanced spirituality. For some, the window into what could be lifelong health complications had instilled a fear that impacts their entire life. One respondent commented how her older children, as a result of her later pregnancy, now fear her doctor's visits and she has to work hard to convince them that she will return home to them after a doctor's visit. Lingering health effects for some make even little tasks a chore and for others have inspired aggressive, pro-active lifestyle changes to fight those health conditions head on.

Minnesotan Sara Ross Reisma lost 116 pounds, began running races, wanting to get as healthy as possible before ever trying another pregnancy. She chronicles her path on her blog, www.fatlittlelegs.com.
For those who went on to subsequent pregnancies, they did so more educated, attune to their bodies and the signs and symptoms of preeclampsia. Many have become advocates for the "empowered patient" movement, to ensure they get the best care possible and aren't ignored.

Renee Feagan, who shared her story in the November 2010 Expectations, commented how "each day I struggle not to let preeclampsia define me, but to let it only be a chapter in my life that has changed my course a bit. By changing paths I am a better mom, wife and friend." She further commented on how she no longer multi-tasks, she does fully engage, she cherishes the live-in-the now philosophy, and she focuses on making memories with her daughter. Similarly, other respondents shared how they have given up on their previous tendency - or need - to plan everything as a result of their experience.

For some, surviving or losing a loved one can bring life issues into such focus that "just being" is more than enough. . . and by being - and being present to friends and family your legacy is cast. Others feel called to take a specific action - start a blog, refocus their business or career to support preeclamspia awareness or research, volunteer in their community, or, simply, take a different approach when engaging in idle conversations about pregnancy.

Do you have a story about how preeclampsia changed your life? Want to find out more about the impact on other families like yours? Visit our Facebook page or "Share Your Story" on the Foundation website.

 
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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 Nicole Purnell.

The broadest support is offered via the online community forums, where hundreds of preeclampsia survivors are available to offer virtual hugs to anyone in need of support. The forums have different sections including a Grief and Loss section for those who have lost a child or loved one to preeclampsia. The forum sections are all led and supported by moderators who have personally experienced preeclampsia.

If writing and sharing your story is your therapy, there are two options through the website and forum. The "Share Your Story" section has over 1,100 stories from survivors and families posted on the website. There is also a section in the forum called "Writing Heals". This section is meant as a creative outlet for writing that brings comfort to the hurting.

Thanks to Anne Stone, Jennifer Joyce, Jenny Smith, Melissa Muir, Nicole Purnell and Rosemary Jorden for all the support you have offered to grieving families. If you interested in supporting families that have recently lost a baby or mother, please contact Nicole Purnell for further information. Wishing you hope in the midst of sorrow, comfort in the midst of pain.

 
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Posted on in Preeclampsia Information

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 feel, there is hope. Here are some coping strategies to help you through this experience and allow you to move forward with your life:

  1. Keep the lines of communication open. Talk about what you are going through with your friends and family, and seek professional help if the burden is too much for you to handle on your own.
  2. Know it is not your fault. You made the best decisions you could at the time and nothing you can do will go back and change the past. Relieve yourself of the blame and allow forgiveness to replace it.
  3. Get back to your normal routine as soon as possible. While you may not feel like leaving the house or even taking a shower, start going through the motions as soon as you are able. This will help restore a sense of normalcy and rebuild the activities in which you used to find pleasure.
  4. Get involved. While you may feel helpless to change the events you have been through, you can take action now and get control of not only your future but help others who are experiencing or recovering from a hypertensive disorder of pregnancy. The Preeclampsia Foundation has many outlets for volunteering, donations and advocacy.
  5. Share your story. We each have come to the Preeclampsia Foundation with our own unique story, and the more that is known about the disease, the better equipped we are to fight it. It will also provide you a cathartic outlet for your emotions about your experience, and connect you with empathetic individuals who understand exactly what you are going through.

Whatever your circumstance may be with survivor's guilt, know you are not alone. Be kind to yourself and those around you, and allow yourself to heal at your own pace. You never have to forget what happened to you or your loved one, but you can move forward and eventually come to embrace your survival.

 
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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!


Remember the following tips when advocating for your own health:

  1. Be Honest - It's important to be honest not only with your doctor, but yourself! Don't live in denial. Those nagging headaches may not be related to exhaustion. Don't ignore headaches, as they can be a telling sign that something is wrong, particularly when paired with visual disturbances.
  2. Ask For Help - Ask your partner or kids to help with the chores around the house. Reach out to a family member, neighbor, or friend to pick up the kids from school. Ask your boss if you can work from home a couple days a week to avoid the long commute to and from work. It is common sense, not weakness!
  3. Just Say No - It's ok to say "no". Spreading yourself too thin can cause undue stress. It's in your nature to want to help your family and community, but you also have to slow down and listen to your body. Many of the signs and symptoms of preeclampsia are easily confused with the general discomfort of mid to late pregnancy and recognizing them is easier if you can take the time to assess how you feel.
  4. Knowledge Is Power - It is vital to be educated when it comes to preeclampsia. Take charge of your health by asking your doctor questions, ensuring that your doctor makes time for you to ask questions and share the symptoms you may be experiencing. Visit www.preeclampsia.org and know the facts to provide the best outcome for a healthy pregnancy and delivery.

So, to all you potential Super Women out there: "Know the Symptoms, Trust Yourself" and put your (and your baby's) health first!

 
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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.

Be patient. Recovery is an ongoing process with a different pace for everybody. However, if you are unable to care for your children or basic responsibilities of life, you should seek professional help. Coping mechanisms that may work for you may not work for your spouse or other family members, and vice versa. Healing doesn't mean you will have no pain or bad feelings when thinking about the pregnancy experience, but that you can develop more confidence to be able to cope with your memories and feelings.

Understand your pregnancy experience. Communicate with health care providers to understand the medical and emotional aspects of the experience. If necessary, ask to be referred to a qualified counselor. Whether you are dealing with the loss of a child, the loss of your health or the loss of your “sought after” pregnancy experience, mental health professionals can help you recover normal functioning in life skills. Plus, the Preeclampsia Foundation has great online and print health information resources for you and your family.

Stay connected. Research shows that good social support is vital to recovery. Stay connected in particular with your family and friends. You might also consider joining a support community, whether it is signing up for the Foundation’s Community Forum (www.preeclampsia.org/forum) or contacting your local health department or hospital services for a grief support group. Also, don’t forget that if you are in a relationship or married, severe trauma can be challenging to both partners, so be proactive to strengthen that vital relationship.

Find a great hobby. Not only does it boost your self-esteem, you will connect with people who share interests that are outside of your pregnancy experience. Find a subject about which you are knowledgeable and passionate. For instance, many women find comfort in the life-affirming aspects of nature: go for walks, start a gardening project, or volunteer at a local park or animal sanctuary.

Keep a journal. By writing things down, you can temporarily dissociate yourself from the world and start to chart your road to recovery. Write in it every day, even if it is only to state three good things that have happened that day.

Set goals. Start by setting small goals and commit to doing it. Make a list of all the things you used to enjoy and revisit them. Decide which one you are going to focus on and make a small start. Someone close to you can help you be accountable for your progress… or even join you to complete those goals!

For more information about PTSD or PPD research, or citations for these recommendations, please email info@preeclampsia.org.

 
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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 an online survey. Your input will only be used for the book, not any other research studies.

The Pre-eclampsia Survival Guide is expected to be published in the spring/summer of 2013. We will be reviewing the book in draft form to ensure that North American management practices are represented, since the intended audience includes all English speakers worldwide and, of course, we will have the finished product available in our Marketplace.

Despite conflicts over the hyphen in "pre-eclampsia", our universal understanding and management of the hypertensive disorders of pregnancy is mostly aligned in high resource countries. As with most medical issues, there will always be a variety of opinions, especially in a disorder with the moniker "the disease of theories", but we expect this will be a very sought after and trusted reference book for patients and providers alike.

 

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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 provided a "return" for its investment.

Traditionally, the physician or healthcare provider was looked upon as an authority, but you, the patient, have now taken center stage. Under patient-centric care, healthcare providers will function more like coaches and you, as the patient, will be expected to become more involved in your care. For a pregnant mom, this is critical. Gone will be the days of physicians "rushing through patients," barely listening to the fetal heartbeats and missing important clues that could compromise your care. Why? Because of the use of electronic medical records and the new system of "pay for performance." The electronic medical records have safety measures programmed into its system making it difficult for doctors to miss important red flags. Physicians will not be paid based on their number of office visits but by the outcome of the patient. Did the care provided by the physician improve the patient's health? That is the basis by which they will be paid.

One of the main reasons for missing a diagnosis of preeclampsia is that someone is not paying attention. Somewhere during the course of your care, someone drops the ball. The blood pressure that has been creeping up for the past 2 visits is not addressed. The protein in the urine ignored. The 5-pound weight gain in one week overlooked. The new complaint of a headache not heard. Unfortunately preeclampsia does not always present in textbook-fashion in the manner that we were taught in medical school. It has many disguises and there must be a high index of suspicion for those disguises to be recognized.

In business, there is something called a "butterfly effect" where one "small" missed detail can cause big problems. The same principle can be applied to medicine. When a "small" risk factor of a patient is overlooked, it places her in harm's way. Women who are pregnant for the first time, especially those who are under 18 and over 35, are at risk for preeclampsia. All African American women are at risk. Women who have a history of hypertension are at risk. All of these patients should be duly informed at their first prenatal visit of the potential for developing preeclampsia. The purpose is not to alarm but to inform.

Patient-Centric-Care Month is a time for celebration. The patient has finally returned to center stage. Although long overdue, better late than never.

Linda Burke-Galloway, MD, MS, FACOG, is the author of The Smart Mother's Guide to a Better Pregnancy, one of the Top 3 books in our Report on Pregnancy Guidebooks. She is also an Ob-Gyn Patient Safety and Risk Management Expert.

 
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A recent study in the September 2012 issue of Obstetrics & Gynecology took a look at the seasonal flu vaccine, recognizing that many women are concerned (check out our forum posts about it, here and here) about introducing any drugs or vaccinations during pregnancy.

During the 5-year study period, over 10,000 women received the seasonal influenza vaccine while they were pregnant, a few during the first trimester, but most of them during the second and third trimesters. The babies born to those mothers who got vaccinated in any trimester did not have an increase in major malformations. In addition, stillbirth or neonatal death, as well as premature delivery were significantly decreased in the vaccinated group. Although this study corroborates other similar research and further supports CDC reports, one of its newer findings is that getting vaccinated in the first trimester was not associated with an increase in major malformation rates and was associated with a decrease in the overall stillbirth rate.

Further, the flu vaccine will also provide some secondary passive immunity (antibody transfer to the baby) to the newborn during a very vulnerable time, especially important if they are babies from preeclampsia-complicated pregnancies since that often means prematurity or growth restriction. Pregnant women who get the flu shot pass their immunity to their babies in the form of flu antibodies. Influenza protection was seen in newborns up to four months old. Babies born to women who were not vaccinated during pregnancy showed no antibody protection.

When the "swine flu" and its associated vaccine first made news several years ago, we researched the issue and reported that the H1N1 vaccine, as it was more accurately labeled, was safe and in fact recommended for pregnant women as a protection against that dangerous virus. Fortunately, that version of the flu has pretty much come and gone for now.

However, another disease that is very dangerous to new babies is whooping cough. While it may result in an annoying cough to the mother, it can be lethal to newborns. Research studies have similarly supported the safety of that vaccine.

"It is much better to get vaccinated during pregnancy and have your newborn somewhat protected, before starting the usual schedule of infant immunizations," explains Dr. Tom Easterling, Director of the Foundation's Medical Advisory Board and a Maternal-Fetal Medicine physician at the University of Washington.

What does all that mean for you? It's flu season and unless you live in a plastic bubble, you should get yourself inoculated against the seasonal flu and whooping cough, even if you're pregnant. It has no bearing on whether or not you will develop preeclampsia. Most local pharmacies offer the vaccines for very a low fee; your doctor's office or local clinic often provide easy-to-schedule nurse appointments; and public health departments provide them at no cost for qualified individuals. More information including where you can get the flu shot and who's most vulnerable can be found here.

 
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Encore Public Relations was named a Bronze Stevie Winner in the PR Campaign of the Year/Community Relations category in the 9th annual Stevie® Awards for Women in Business on November 9 for their work with the Preeclampsia Foundation. Encore Public Relations lead strategy efforts and execution for a multi-platform campaign that raised awareness during the 2012 annual Promise Walks for Preeclampsia across the country.

"Ironically, it was during this same weekend last year when we had the good fortune to meet Laurie and Elaine in New York City," said Eleni Tsigas, Preeclampsia Foundation's executive director. "The women were in town for another honor they were receiving and via wonderful circumstances, we were brought together at Saving Grace, our annual benefit gala."

Laura Archbold, principal of Encore Public Relations, upon receiving their award, said. "We humbly accept this honor on behalf of our client and their important and critical mission."

More than 1,200 entries were submitted this year for consideration in more than 90 categories, including Executive of the Year, Entrepreneur of the Year, Women Helping Women, and Communications Campaign of the Year.

More than 130 business professionals worldwide chose finalists during preliminary judging. More than 90 members of the five final judging committees determined the Gold, Silver and Bronze Stevie Award placements from among the Finalists during final judging.

Details about the Stevie Awards for Women in Business and the list of Finalists in all categories are available at www.StevieAwards.com/Women.

 
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The "Ask the Experts" section of the Preeclampsia Foundation's Community Forum has 318 questions answered by members of our medical board - top researchers and clinicians in hypertensive pregnancies.

Readers often visit this section, not for definitive answers to any one particular question, but to provide spark ideas about other topics or terms to search, and especially new questions to ask your doctor. The Experts answer anonymously and do not give medical advice on any specific case, but they do contribute to the ongoing discussion of preeclampsia-related topics. Information in the older links may not always reflect current understanding of the disease or today's management practices.

Here are Forum Director Heather Curtis' top 5 tips for using our free service, "Ask the Experts":

1. Read the topic "headlines" for the questions that have been asked. When I first started reading I would just browse and read through the links that looked interesting, that were similar to questions I had in my own pregnancies, or that brought up concerns for me for future pregnancies. For example, Current thinking on low-dose aspirin? and Surrogacy and preeclampsia.

2. See if your question is a Frequently Asked Question (FAQ), first topic in the list. That's a rich repository of solid answers that may meet your need without looking at some of the other more unusual topics.

3. Look at the number of replies. Most topics have only one reply - and often only one is needed. But I always enjoy the topics with more than one reply, to see how the experts agree or disagree, who is able to write most clearly, who touches on the more complicated aspects of the disease and treatment, and who tries to make their answer the most clear while glossing over the complicated variations. It's like watching a live political debate! Topics that have 7+ responses are common questions with often contested answers. These situations allow the Experts to share their opinions and data, rather than depend on individual experiences with doctors who may not be aware of the most current research and clinical practices.

For example, many doctors still prescribe lovenox/heparin, but the Experts' opinions range from guarded acceptance in only certain cases, to limited hope that it will make a difference, to one Expert who noted that for current clinical use "Any suggested benefit will be based on junk science and dogma."

4. Search using keywords other than just "high blood pressure" or "proteinuria." I've found interesting information using "superimposed" preeclampsia, and "unmasked" chronic hypertension. Sometimes I remember keywords from previous browsing sessions. Often silly words like "Wyoming" or "flight" or "full deal" will get me to the answer I remember more quickly than a more common term.

5. Search using keywords from Forum questions. New questions in "Ask the Experienced" or other areas of the forum will make me remember an "Ask the Expert" response or will spark my interest to start new searches. A recent question made me think of "kidneys" as a keyword. The search returned 22 options. I read them all to get an overview and to find commonalities in the answers such as terms and information. I then drilled down to figure out what keywords to search next.

Searching on "kidneys" demonstrates why an oft-repeated myth can be dangerous. Many women report that their protenuria decreases while on bedrest. This link explains why and cautions against false reassurance. Searching on "kidneys" also gave me links to share with women who have been afraid of lasting kidney damage from preeclampsia.

Finally, the Experts volunteer their time so we have a "gatekeeper" system to keep the same questions from being asked repeatedly. In those cases, we answer frequently asked questions with consolidated information previously provided by the Experts. You can also ask your question in the "Ask the Experienced" section of the forum and your fellow survivors will share what they have read and experienced.

How have you used the "Ask the Experts" archives? What have you learned from reading their responses? What are your favorite links?

Heather Curtis is the Community Forum Director and provides a wealth of history and information about preeclampsia. Visit the Forum to learn more from her and the other trained moderators.

 
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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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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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"Loss makes artists of us all as we weave new patterns in the fabric of our lives."~ Greta W. Crosby, Author of Tree and Jubilee, a book of meditation

Writing about any situation will help you gain perspective on it. Many people find they can identify and express their feelings through journaling. This expression not only contributes to our self-awareness, it also contributes to healing through the letting out of emotions, self-acceptance, and the identification of any negative self-talk patterns that we should and can intentionally replace with positive thoughts.

We get to revisit and revise our thoughts as they ebb and flow. We get to acknowledge our sorrows; speak to, honor and love those we have lost; and find meaning so we can move forward with hope and strength. Writing need not be confined to prose. Prayers, poems, favorite quotations, and drawings often take wing on the pages of our journals.

We invite you to share your writing in the Writing Heals Forum on www.preeclampsia.org.

 
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SOME HEAVY FACTS

Approximately 800 women die from pregnancy or childbirth-related complications around the world every day.(1) Ninety-nine percent occur in developing countries. The higher number of maternal deaths in some areas of the world reflects inequities in access to health services and the gap between rich and poor.

The complications that account for 80% of all maternal deaths are:

  • severe bleeding (mostly bleeding after childbirth),
  • infections (usually after childbirth),
  • high blood pressure during pregnancy (preeclampsia and eclampsia), and
  • unsafe abortion.

The remaining 20% are associated with diseases such as malaria and AIDS during pregnancy.

Maternal health and newborn health are closely linked. More than three million newborn babies die every year, and an additional 2.6 million babies are stillborn.(2)

The risk of maternal mortality is highest for adolescent girls under 15 years old.(3,4) Women in developing countries have on average many more pregnancies than women in developed countries, and their lifetime risk of death due to pregnancy is higher. The probability that a 15-year-old woman will eventually die from complications of pregnancy is 1 in 150 in developing countries versus 1 in 3800 in developed countries.


THE IMPACT OF PREECLAMPSIA

Preeclampsia and related hypertensive disorders of pregnancy impact 5-8% of all births in the United States.(5,6) Incidence rates for preeclampsia alone - in the United States, Canada and Western Europe, range from 2-5%.(5,6) In the developing world, severe forms of preeclampsia and eclampsia are more common, ranging from a low of 4% of all deliveries to as high as 18% in parts of Africa.(5) The variation in incidence rates is driven by the diversity of definitions and other criteria (including procedures, tests and their methodologies). In Latin America, preeclampsia is the #1 cause of maternal death.(7)

Ten million women develop preeclampsia each year around the world. Worldwide about 76,000 pregnant women die each year from preeclampsia and related hypertensive disorders. And, the number of babies who die from these disorders is thought to be on the order of 500,000 per annum.(8)

In developing countries, a woman is seven times as likely to develop preeclampsia than a woman in a developed country. From 10-25% of these cases will result in maternal death.(9)

Preeclampsia should be detected and appropriately managed before the onset of convulsions (eclampsia) and other life-threatening complications. Administering drugs such as magnesium sulfate for pre-eclampsia can lower a woman’s risk of developing eclampsia. In the U.S., pregnant women are commonly followed by a health care specialist (doctor, midwife or nurse) with frequent prenatal evaluations. In areas of the world with little access to care and lower social status of women, traditional health practices are usually inadequate to detect preeclampsia early. Hypertensive disorders of pregnancy commonly advance to more complicated stages of disease, and many births and deaths occur at home unreported.

Poor women in remote areas are the least likely to receive adequate health care. This is especially true for regions with low numbers of skilled health workers, such as sub-Saharan Africa and South Asia. Although levels of prenatal care have increased in many parts of the world during the past decade, the World Health Organization reports that only 46% of women in low-income countries benefit from skilled care during childbirth.(1) This means that millions of births are not assisted by a midwife, a doctor or a trained nurse.


PREECLAMPSIA AWARENESS SAVES LIVES

The onset of preeclampsia can occur suddenly. In developed countries such as the U.S., a primary factor preventing women from seeking immediate, rapid medical attention is a lack of awareness and understanding of the signs and symptoms of the disease.(10) Worldwide, factors preventing women from seeking or receiving care are:

  • poverty,
  • distance,
  • lack of information,
  • inadequate services, and
  • cultural practices.

To improve maternal health worldwide, barriers that limit access to quality maternal health services must be identified and addressed at all levels of the health system. The Preeclampsia Foundation’s mission, as it applies to the global burden of this disease, includes advocating for greater awareness and attention to the preeclampsia within broader maternal health initiatives, identifying and supporting improvements to health care delivery – in all settings, and encouraging empowerment and engagement of women through effective preeclampsia education.


REFERENCES

1. World Health Organization Fact Sheet, May 2012.

2. Cousens S, Blencowe H, Stanton C, Chou D, Ahmed S, Steinhardt L, Creanga AA, Tunçalp O, Balsara ZP, Gupta S, Say L, Lawn JE. National, regional, and worldwide estimates of stillbirth rates in 2009 with trends since 1995: a systematic analysis. Lancet, 2011, Apr 16;377(9774):1319-30.

3. Conde-Agudelo A, Belizan JM, Lammers C. Maternal-perinatal morbidity and mortality associated with adolescent pregnancy in Latin America: Cross-sectional study. American Journal of Obstetrics and Gynecology, 2004. 192:342–349.

4. Patton GC, Coffey C, Sawyer SM, Viner RM, Haller DM, Bose K, Vos T, Ferguson J, Mathers CD. Global patterns of mortality in young people: a systematic analysis of population health data. Lancet, 2009, 374:881–892.

5. Villar J, Say L, Gulmezoglu AM, Meraldi M, Lindheimer MD, Betran AP, Piaggio G; Eclampsia and pre-eclampsia: a health problem for 2000 years. In Pre-eclampsia, Critchly H, MacLean A, Poston L, Walker J, eds. London, RCOG Press, 2003, pp 189-207.

6. Ronsmans C, Graham WJ on behalf of the Lancet Maternal Survival Series steering group, “Maternal mortality; who, when, where and why.” The Lancet, Maternal Survival, September 2006.

7. Preeclampsia: A Decade of Perspective, Building a Global Call to Action. Preeclampsia Foundation, Melbourne, Florida, Nov 2010.

8. Kuklina EV, et al. Hypertensive Disorders and Severe Obstetric Morbidity in the United States. Obstet Gynecol 2009; 113:1299-306.

9. Maternal mortality in 2005: estimates developed by WHO, UNICEF, UNIFPA and the World Bank, Geneva, World Health Organization, 2007.

10. Lack of Preeclampsia Awareness Increases Risk of Infant Mortality, Press Release, Preeclampsia Foundation, May 8, 2008.

 
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