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The Straight Scoop On Inductions – Lamaze International Releases New Infographic

November 21st, 2013 by avatar

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The health concerns that affect preterm babies are well documented and much is known about the impact of an early birth on the long term health of children.  Some of these issues were discussed in a recent post on Science & Sensibility highlighting World Prematurity Day.  The issue of babies being born too soon was highlighted by the American College of Obstetricians and Gynecologists (ACOG) in a new committee opinion recently published in the November issue of Obstetrics and Gynecology.

In a joint committee opinion, “The Definition of Term Pregnancy” released by ACOG and the Society for Maternal Fetal Medicine, these organizations acknowledge that previously it was believed that ”the period from 3 weeks before until 2 weeks after the estimated date of delivery was considered ‘term’ with the expectation that neonatal outcomes from deliveries in this interval were uniform and good.”  More recent research has demonstrated that this is not the case.  The likelihood of neonatal problems, in particular issues related to respiratory morbidity, has a wide variability based on when during this five week “term” window baby is born.

ACOG has released four new definitions that clinicians and others can use when referring to gestational age; early term, full term, late term and postterm.

  1. Early term shall be used to describe all deliveries between 37 0/7 and 38 6/7 weeks of gestation.
  2. Term shall indicate deliveries from 39 0/7 and 40 6/7 weeks of gestation.
  3. Late term refers to all delivers rom 41 0/7 to 41 6/7 weeks of gestation.
  4. Postterm indicates all births from 42 0/7 weeks of gestation and beyond.

These new definitions should be put into practice by all those who work with birthing women, including researchers, clinicians, public health officials and organizations AND childbirth educators. We can and should be teaching and using these terms with our students.

As we move forward, we can expect to see these terms applied and research defined by the new categories, which will yield rich and useful information for those working in the field of maternal-infant health.

Lamaze International has long been focused on evidence based care during the childbearing year and continues to support childbirth educators, consumers and others by providing useful and fact based information that women and their families can use to make informed choices about their maternity care.  As part of this continued effort, Lamaze is pleased to share a new induction infographic created by the Lamaze Institute for Safe & Healthy Birth committee. This easy to read infographic is designed to highlight the facts about induction and encourage women to carefully consider all the information before choosing a non-medically indicated induction.  More than one in four women undergo an induction using medical means, and 19% of those inductions had no medical basis.

Since many women are pressured by providers or well-meaning but misguided friends and family to be induced, Lamaze encourages women to learn what are the important questions to ask during conversations with their providers and to get the facts about their own personal situation.  It is also recognized that a quality Lamaze childbirth education class can provide a good foundation for understanding safe and healthy birth practices.

Lamaze International is proud of their Six Healthy Birth Practices for safe and healthy birth, and this infographic supports the first birth practice; let labor begin on its own.  Women need to be able to gather information to discern between a medically indicated induction, which protects the baby, the mother or both from those induction that are done for a social or nonmedical reason which increases the risk of further interventions, including cesarean surgery for mothers and NICU stays for babies who were not ready to be born. This infographic can be shared with students, clients and patients.  It can be hung in classrooms and offices.  Educators can use it in creative ways during teaching sessions, when discussing the topics of inductions, informed consent and birth planning.

As the benefits of a term baby are more clearly understood, and research is revealing how critical those last days are for a baby’s final growth and development, it is perfect timing for Lamaze to share this infographic.  This tool will reduce unneeded inductions and help women learn how important it is to allow their babies to receive the full benefit of coming when the baby is ready.  There has been a huge push to stop inductions before at least 39 weeks.  March of Dimes has their “Healthy Babies are Worth the Wait” campaign. The new induction infographic provides an accessible and easy to use information sheet to help families reduce non-medical inductions. Many organizations, including Lamaze are joining together to make sure that babies are born as healthy as possible and women go into labor naturally when baby is ready.

You can find and download the full version of the Induction infographic on the Let’s Talk Induction page of Lamaze’s Push for Your Baby campaign website.  Alternately, if you are a Lamaze member, you can also download the infographic and many other useful handouts from the Teaching Handouts Professional Resource Page from Lamaze International.

Please take a moment to read over this great, new infographic and share in the comments below, both your thoughts on the finished product and how you might use this to help mothers to push for the best care. Lamaze International and its members are doing their part to help reduce the number of early term babies who arrive before they are ready.  I look forward to hearing your thoughts and your ideas for classroom use.

References

The American College of Obstetricians and Gynecologists Committee on Obstetric Practice Society for Maternal-Fetal Medicine. Committee Opinion No 579: Definition of Term Pregnancy. Obstet Gynecol 2013; 122:1139.

Declercq, E. R., & Sakala, C. (2013). Listening to mothers III: Pregnancy and childbirth.”. 

 

ACOG, Babies, Childbirth Education, Evidence Based Medicine, Healthy Birth Practices, informed Consent, Maternal Quality Improvement, Medical Interventions, New Research, Newborns, NICU, Practice Guidelines, Pre-term Birth, Push for Your Baby, Research , , , , , , , , , , ,

Now I Lay Me Down To Sleep Photography; Honoring the Babies Whose Stay Was Too Short

October 15th, 2013 by avatar

© Vicki Zoller

October 15 is National Pregnancy and Infant Loss Remembrance Day. If you are a professional who works with expecting families, you no doubt will at some point have a family who suffers a loss during their pregnancy, a stillbirth or the death of their newborn in the days and weeks after birth.  I wanted to share with Science & Sensibility readers a wonderful organization dedicated to honoring the loss or short life of a baby. Now I Lay Me Down To Sleep is a non-profit organization of photographers dedicated to capturing the images of a beautiful baby taken too  soon from the families who loved them.  I had the opportunity to interview a longtime photographer, Vicki Zoller with the program for today’s post in honor of this special day.  On Thursday, we will meet a family who lost a child and had their story documented by Vicki through the NILMDTS program.

_______________________

Sharon Muza:  How did you become involved in NILMDTS?

Vicki Zoller: 
I heard about the organization through another photographer. I haven’t experienced a loss but felt the draw of this work as a photographer. Being able to capture that moment in time, that private, painful moment in time and hold it captured forever for the family was the draw for me.  I have been involved in NILMDTS since 2008.

 SM:  What kind of photographer makes a great NILMDTS photographer?

VZ:  I think that a photographer that appreciates what a gift they possess and can share in such a meaningful way is what makes a great NILMDTS photographer. Having a skill, a unique skill that allows you to come into that room and forever record this moment is something that you either ‘get’ as a photographer or you don’t. The photographers that I have worked with, trained and become friends with in this organization have a passion for this. There is chord that resonates in us that tells us, ‘how can I NOT do this’. How often in life do we really get to make this kind of difference? How often do we really get the chance to make something a bit better out of something so horrible. It’s a chance to not just stand on the sidelines and say, ‘Oh how sad’ or to feel powerless. It’s that opportunity to know that you truly are making a difference.

SM: If there is a photographer interested in joining NILMDTS, what are the first steps that they should take?

VZ: They need to go to the main website at Now I Lay Me Down To Sleep and apply to become an affiliate photographer. During the application process an applicant will be asked to submit samples of their professional level work, demonstrating use of natural and auxiliary lighting. If they want to find out more about the organization before they apply they can, at the same website, click on the ‘find a photographer’ link and find someone in their area that might be willing to answer some questions for them.

SM:  Is there special training that a NILMDTS photographer receives before beginning this work.

VZ: NILMDTS photographers are given a training manual after they are accepted. Many larger areas, like here in the Greater Seattle Area, offer training on a fairly regular basis. We also have our new photographers go on a session with a more experienced photographer just to get a feel of where to go, what to say, how to handle the session, etc. But there are many of us, especially those that came into the organization early on, that never had that opportunity to ‘train’ or ‘shadow’ with a photographer. We just went when the hospital called and did what we knew how to do as photographers . . . capture beautifully lit and composed images that the family would have as keepsakes. Not really all that different than what we would try to do for a regular ‘paying’ client. We want to give our NILMDTS families the same quality as we would want to give to anyone.

SM:  How do you record the beauty of these little ones when their bodies may be scarred, or changed due to illness, medical equipment, etc. Do you “celebrate” these things or do you use your skills to portray the babies in a different light?

© Vicki Zoller

VZ: We never change anything that the baby was born with. These are special aspects of a beautiful new baby. So things like cleft lips or special features are kept as is and are indeed celebrated as part of this child. We do retouch images. We retouch blood, mucus, tears in skin, perhaps close the eyes if needed and generally try to create a gently retouched but authentic image of the baby. We may remove tape that held in medical equipment and try to give the family an image that doesn’t have “hospital’ written all over it. We try to pose the babies in gentle and sensitive ways with the parents and without. We tend to keep it simple and clean and truthful in the emotion of the day. We photograph many details, the little feet and hands, the profile, the ears, the swirl of hair on the top of the head. We want the family to have all these details to remember with. Especially when the detail may be a family trait of some kind such as a crocked finger or toes that splay wide . . . just little special things.
All our images are converted to Black and White or Sepia to provide a gentler viewing for the family.

SM: How do you not let the sadness and grief come into your life, when your work taking and processing the pictures is done?

VZ: The beauty of having a camera in front of your face is that is becomes a filter to the events and emotions in the room. That isn’t saying that we don’t feel things while we are there but when you have a job to do, a task to complete, that is where your mind tends to go and that camera is a filter. You are looking at the world through a bit of space that holds only a piece of the room at a time or a piece of the baby at a time. That makes a HUGE difference. We tend to go in to ‘photographer mode’ and that is where we stay during the session. Sometimes processing the images is the harder part. Now you have these images, large and real, on your computer screen and you are looking at them closely to see what you can do to improve them. It tends to come home emotionally for many photographers once they have the images on the computer. 

SM: Can you share a very challenging moment or situation in your work with NILMDTS?

VZ: That’s a tough one but generally the hardest tend to be the full term babies with NO VISIBLE signs of WHY they passed. I’ve been at sessions where mom was fine, baby was fine, all through labor but then at delivery things went south. On one occasion, it was a full term baby boy that came out screaming and crying but once the cord was cut he passed . . . instantly everything changed. I think that for me those kinds of sessions are the toughest. To be so CLOSE to the finish line, to almost have that baby all warm and pink and crying and then to have nothing . . . 
When you see a baby with obvious things wrong or they came too early or the parents have had to make that terribly hard choice to end the pregnancy due to health issues you can almost accept it better. Sort of like, ‘Ah ha! That’s the reason, there it is’. It gives you something to wrap your brain around. 
Not as easy to do with full term losses .  

SM: What would you like birth professionals to share with ALL parents about the NILMDTS program.

VZ: We are free. That is really important for them to know. I think they see our brochures and wonder how much it will cost them.
We are professional. We come in, we act professional, we capture professional quality images, we respect the environment we are in and we respect our families’ privacy and their pain. 

SM: Are there brochures available for placement in childbirth classes, health care provider offices, etc?

VZ: Yes, brochures are available either from our headquarters in Denver or you can get some from your local Area Coordinators or photographers.

 SM:  How does NILMDTS get the word out to birth professionals about the services that are offered to parents?

 

© Vicki Zoller

VZ: Our photographers and our Area Coordinators generally are the ones that get the information out there. I contacted the nursing managers at all our local hospitals when I first started. I built relationships and over time, as they saw the work we did, saw how we interacted with their patients, saw the benefits of what we can give, they began calling us more and more often. It’s a good feeling to be a part of the bereavement groups at the hospitals, to be something that the nurses can offer these families in such a horrible time. There is so little consolation that can be given but the prospect of having some beautiful and thoughtful images of your baby can be of great help in that horrible time.

SM: Who can use the services of NILMDTS?

VZ: All hospitals and birth centers. Also social workers for fetal medicine. Funeral homes as well. Any one that wants to contact us for any reason that might involve this special kind of photography is welcome to call. 

SM: Do you take pictures just of babies or do you also record older children?

VZ: Generally just babies. But if asked we would, if a photographer is ok with it, offer our service for older children. Soulumination (in the Puget Sound, WA area) is another photographer organization that often provides ‘life portraits’ for families of older kids facing a grim prognosis or for children under 18 whose parents are facing a terminal illness. 

SM: How are you received by the staff of the facilities you take pictures in?

VZ: At first it was a bit sketchy. Some nurses thought it was weird, grim, maybe not appropriate. But generally once they see the quality of our work and how it helps the family they become very accepting. We are now very well received at all the major hospitals in the greater Seattle Area.   

SM: What do you tell parents when they are unsure if they want pictures?

VZ: Generally it isn’t us that contacts the parents about our services. The nurses or the social worker will offer the service to the parents. We only come if the parents want us to come. We don’t come just because a nurse wants the photos taken. It is only at the request of the parents. 
Once there, parents might be feeling ambivalent about having images done. It is so surreal isn’t it? Here you are with a baby that has passed and in comes a professional photographer to take portraits!! 
If they tell me they don’t want any photos with the baby I gently remind them that today is raw and painful but there will come a time when the pain has lessened and I don’t want them to have any regrets about not having at least one image of their baby’s hand in their hand. Once I mention that it is just their hands they are more receptive and then sometimes it progresses from hands to a complete family portrait. But we don’t push too hard. As long as they have some photos of their baby, then they will find some peace in that.

 SM: Do you stay connected with families after you have completed your phot session?

VZ: On occasion. It isn’t something that I pursue. If it happens organically, then it’s wonderful. I have been able to see some of my families go on to have other babies, healthy, wonderful babies and I love that!!

SM: Is there anything you would like readers of Science & Sensibility to know?

VZ: If you or anyone you know has ever experienced a loss, please know that there are others out there just like you that are recovering and it’s important to not feel alone, find groups out there that have families going through loss as well. Stay connected to those that will understand what you are feeling.
 NILMDTS is an amazing organization that is always looking for new photographers and community volunteers. If anyone wants more information please contact me or NILMDTS headquarters.

Healthcare professionals are awesome and anyone working in the labor and delivery field knows how fragile the delivery process can be. There is always that moment when you can almost see mom and baby on that razor thin edge between life and death. Having a healthy baby is hard work and those that care for moms during pregnancy and birth are special people! We want to be a part of your bereavement kit but we hate it when you have to make that call. But when you do, please know we will be creating some meaningful images for your families and that we will do that with love and compassion.

Have you had experience with NILMDTS on a personal or professional level?  Do you share this resource with your students, clients and patients so that they are aware of this wonderful organization?   Are you also a photographer who captures these sweet babies? How do you help families experiencing pregnancy and infant loss?  What are your favorite resources.  Please share your thoughts with our readers in the comment section.  And if you know a NILMDTS photographer, thank them on this day, for the heart work that they do.

 

Babies, Childbirth Education, Newborns, Pre-term Birth, Pregnancy Complications, Trauma work, Uncategorized , , , , , , , ,

Bed Rest to Prevent Preterm Birth Both Ineffective and Harmful

July 9th, 2013 by avatar

 Today, regular contributor, Henci Goer takes a look at the recent study on prescribing bed rest for the prevention of preterm birth.  Despite not preventing a premature baby, and even possibly increasing the likelihood, it is still routinely recommended for pregnant women.  Please enjoy this research review and share your thoughts with Henci and I in the comments section. – Sharon Muza, Science & Sensibility Community Manager.

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© Sindea Horste sindea.org

In May, The New York Times and Reuters ran articles on a study published the following month finding that restricting activity did not prevent preterm birth in first-time moms with a short cervix (less than 30 mm) (Grobman 2013). A secondary analysis of a randomized controlled trial of injected progesterone vs. placebo, investigators looked at the effect of “activity restriction,” defined as restriction from sexual activity, work, or nonwork activity, in 646 women. They found that 39% of women reported being restricted in one or more of these categories, and two-thirds of them (68%) were restricted in all three with the vast majority (25th to 75th percentile) receiving that prescription between 24 and 28 weeks gestation. Birth before 37 weeks was three times (odds ratio: 2.9) more likely in the restricted group (raw difference: 37% vs. 17%). Adjustment for trial assignment group and factors associated with likelihood of being placed on activity restriction, didn’t much change that ratio (odds ratio: 2.4). The same held true for the likelihood of birth before 34 weeks (odds ratio: 2.3). And here’s the kicker: not mentioned in the secondary analysis is that the trial itself found that progesterone treatment made no difference in preterm birth rate at less than 37 weeks (25% vs. 24%) (Grobman 2012 ).

In other words, not prescribing activity restriction was effective; progesterone treatment was not. Study authors speculated that the reason for the paradoxical effect of activity restriction may be that it is stressful and anxiety provoking and that anxiety and stress may increase risk of adverse pregnancy outcomes.

The uselessness of bed rest is hardly “stop the presses” news. We have known that bed rest was ineffective at least since 1994 when a review reported that this particular emperor had no clothes (Goldenberg 1994). Studies since have reinforced that conclusion. An accompanying commentary in the same issue as Grobman et al’s study reports on the findings of Cochrane systematic reviews on the effects of bed rest (McCall 2013). Bed rest neither prevents miscarriage, preeclampsia, or preterm birth with singleton or multiple gestation, nor treats hypertension or impaired fetal growth. Publication dates for the set of Cochrane reviews range from 2000 (impaired fetal growth) to 2010 (multiple pregnancy). The review on preterm birth with singleton gestation, the subject of Grobman et al.’s study, was published in 2004.

These consistent results, however, have not affected practice. An editorial on the Grobman and McCall articles states that 95% of obstetricians recommend activity restriction or bed rest and that 71% of maternal-fetal medicine specialists responding to a survey would recommend it after arrested preterm labor despite the finding that 72% of survey participants didn’t think it would help (Biggio 2013). Why aren’t doctors paying attention to their own research? Biggio thinks it may be fear of liability if a bad outcome were to occur and bed rest hadn’t been prescribed and the belief that bed rest is harmless. It isn’t, and this is known too. McCall, Grimes, and Lyerly quote from an American College of Obstetricians and Gynecologists’ Practice Bulletin on managing preterm labor (ACOG 2012):

Although bed rest and hydration have been recommended to women with symptoms of preterm labor to prevent preterm delivery, these measures have not been shown to be effective for the prevention of preterm birth and should not be routinely recommended. Furthermore, the potential harm, including venous thromboembolism, bone demineralization, and deconditioning, and the negative effects such as loss of employment, should not be underestimated. [Emphasis mine.]

To this, McCall, Grimes, and Lyerly add adverse psychosocial effects on women and their families, including the potential for women blaming themselves when bed rest fails to avert preterm birth, and now Grobman et al’s study suggests the possibility of increasing the risk of preterm birth.

In the Reuters article, Grobman states that “any pregnant woman who is told to restrict her activity or stay in bed should discuss with her doctor whether there is data to support that recommendation given her condition.” Fair enough, but how is she supposed to know to do that? What role can or should childbirth educators and doulas play? What might Lamaze International or other childbirth-related organizations do to spread the word? What are your thoughts?

References 

ACOG practice bulletin no. 127: Management of preterm labor. (2012). Obstet Gynecol, 119(6), 1308-1317. doi: 10.1097/AOG.0b013e31825af2f0

Biggio Jr, J. R. (2013). Bed Rest in Pregnancy: Time to Put the Issue to Rest.Obstetrics & Gynecology121(6), 1158-1160.

Goldenberg, R. L., Cliver, S. P., Bronstein, J., Cutter, G. R., Andrews, W. W., & Mennemeyer, S. T. (1994). Bed rest in pregnancyObstetrics & Gynecology,84(1), 131-136.

Grobman, W. A., Gilbert, S. A., Iams, J. D., Spong, C. Y., Saade, G., Mercer, B. M., … & Van Dorsten, J. P. (2013). Activity restriction among women with a short cervixObstetrics & Gynecology121(6), 1181-1186.

Grobman, W. A., Thom, E., Spong, C. Y., Iams, J. D., Saade, G. R., Mercer, B. M., … & Van Dorsten, J. P. (2012). 17 alpha-hydroxyprogesterone caproate to prevent prematurity in nulliparas with cervical length less than 30 mm.American journal of obstetrics and gynecology.

McCall, C. A., Grimes, D. A., & Lyerly, A. D. (2013). “Therapeutic” Bed Rest in Pregnancy: Unethical and Unsupported by DataObstetrics & Gynecology,121(6), 1305-1308.

ACOG, Bed Rest, Childbirth Education, Evidence Based Medicine, Guest Posts, Maternal Quality Improvement, Maternity Care, Medical Interventions, New Research, Pre-term Birth, Research , , , , , , , ,

“Choosing Wisely” in maternity care: ACOG and AAFP urge women to question elective deliveries.

February 21st, 2013 by avatar

 

http://flic.kr/p/4v3Zeh

Last April, the ABIM Foundation, with Consumer Reports and other partners, drew national attention to overuse of ineffective and harmful practices across the health care system with their Choosing Wisely campaign. As part of the campaign, professional medical societies identified practices within their own specialties that patients should avoid or question carefully. Today, the American College of Obstetricians and Gynecologists (ACOG) and the American Academy of Family Physicians (AAFP) have joined the campaigndrawing national attention to the overuse and misuse of induction of labor. ACOG and AAFP are telling women and their maternity care providers:

Don’t schedule elective, non-medically indicated inductions of labor or cesarean deliveries before 39 weeks 0 days gestational age.

Don’t schedule elective, non-medically indicated inductions of labor between 39 weeks 0 days and 41 weeks 0 days unless the cervix is deemed favorable. 

(“Favorable” means the cervix is already thinned out and beginning to dilate, and the baby is settling into the pelvis. Another word for this is “ripe,” and doctors and midwives use a tool called the Bishop Score to give an objective measurement of ripeness. Although ACOG and AAFP do not define “favorable,” studies show cesarean risk is elevated with a Bishop Score of 8 or lower in a woman having her first birth and 6 or lower in women who have already given birth vaginally.)  

Much work has already been done to spread the first message. Although ACOG has long advised against early elective deliveries, a confluence of quality improvement programs and public awareness campaigns have made it increasingly difficult for providers to perform non-medically indicated inductions or c-sections before 39 weeks.

But as the public and the health care community have accepted the “39 weeks” directive, concern about unintended consequences has grown. Christine Morton, a researcher at the California Maternal Quality Care Collaborative and regular contributor to Science & Sensibilitysums up concerns shared by many, including Childbirth Connection:

It is possible that this measure may sensitize stakeholders to the wrong issue: timing of birth rather than the fact that it is generally best when labor begins on its own.  Additionally, is it possible that 39 weeks could become the new “ideal” gestational age, because it will be assumed that 39 completed weeks is the best time to be born?

The second Choosing Wisely statement aims to mitigate these unintended consequences. Inducing with an unripe cervix significantly increases the chance of a c-section and its many associated harms. Women considering induction for a non-medical reason deserve to know about these excess risks, and should question whether it is worth any non-medical benefits of elective delivery they perceive or expect. Lamaze International has spoken to the importance of letting labor begin on its own, as it is the first topic in the Six Healthy Birth Practices.

But will the new message lead women and care providers to think that delivery is indicated once a woman’s cervix is ripe? Through the Choosing Wisely campaign ACOG and AAFP have made powerful statements acknowledging that scheduled delivery is unwise if the baby or the woman might not be ready for birth. Although gestational age and the Bishop score are tools to estimate readiness for birth, the best indicator of readiness is still the spontaneous onset of labor at term, the culmination of an intricate interplay of hormonal signals between the fetus and the woman. Anytime we intervene with the timing of birth we have to weigh the potential benefits and harms of overriding that process in the context of the fully informed preferences and values of women.

This summer, our collaboration with the Informed Medical Decisions Foundation will culminate in the release of our first three Smart Decision Guides. These evidence-based, interactive decision support tools will help women learn the possible benefits and harms of scheduled delivery versus waiting for labor to start on its own and to weigh these based on what is most important to them. These tools help women choose wisely – to identify when an option is not appropriate or safe for them, and to thoughtfully weigh options when there are both pros and cons to consider.

Interested in learning more about shared decision making in maternity care? Sign up for a free webinar on March 13 sponsored by the Informed Medical Decisions Foundation to hear more about what clinicians, consumers, employers, and others thinking about the importance of maternity care shared decision making.

 

ACOG, Childbirth Education, Evidence Based Medicine, Guest Posts, Healthcare Reform, Healthy Birth Practices, Healthy Care Practices, informed Consent, Maternal Quality Improvement, Medical Interventions, Practice Guidelines, Pre-term Birth, Webinars , , , , , , , , , ,

The Unexpected Project: Pre-eclampsia Researched, Revealed and Reviewed. Part II of an interview with Jennifer Carney

February 7th, 2013 by avatar

By: Walker Karraa

Regular contributor Walker Karraa wraps up her interview with Jennifer Carney, who became active with The Preeclampsia Foundation and the Unexpected Project after suffering from eclampsia while pregnant with her second child.  Have you had to answer any questions in your classes or with your clients and patients after the recent episode of Downton Abbey, where one of the characters developed eclampsia?  What have you shared with your pregnant families? Part one of Walker’s interview with Jennifer Carney can be found here. – Sharon Muza, Community Manager.  

Walker: What do you see are the common myths regarding pre-eclampsia?

JC: Common myths? Oh, there are so many. A lot of people seem to think they know what causes preeclampsia and how to cure it. There’s a whole faction of advocates who buy into the work of Dr. Tom Brewer, who in the 1960′s, devised a very high protein diet for mothers based on the idea that preeclampsia is caused by malnutrition. This isn’t supported by the current research, but it gets repeated all the time. Other people argue that preeclampsia is a so-called “lifestyle” disease – caused by obesity and poor prenatal care. Obesity is a risk factor, but it is only one of many and poor prenatal care can cause the disease to go undetected, but it will not cause it to happen in the first place. There are also a lot of people who think that the delivery of the baby will end the risk to the mother – and while it’s true that the removal of the placenta is essential, preeclampsia or eclampsia can still happen up to 6 weeks after delivery. There are other myths, but it strikes me that so many of these myths are rooted in a desire to control pregnancy. If we can blame preeclampsia on one central cause or on the women who develop it themselves, then we can reassure ourselves that we won’t develop it, too. There are risk factors that can increase a woman’s chances of developing the disease, but women without any known risk factors have developed it, too.

It’s not comforting to think that no one is safe, but with knowledge of the signs and symptoms – a woman can react to it promptly and receive the care that she needs. But this will only happen if women get the information and understand that it CAN happen to them. I am blown away by the ways in which preeclampsia and other serious complications are downplayed and dismissed in pregnancy books, online and even by some medical practitioners. Preeclampsia CAN happen to you – but you can deal with it IF you know the signs and the symptoms.

Walker: Can you share with our readers what you are doing with Anne Garrett Addison at The Unexpected Project?

JC: The Unexpected Project is a documentary, website, and book project that will examine the rate of maternal deaths and near-misses in the United States. Anne Garrett Addison, who founded the Preeclampsia Foundation, and I are both classified as near-misses due to preeclampsia. With Unexpected, we want to take a look at all maternal deaths regardless of the cause – preeclampsia, amniotic fluid embolism, hemorrhage, placenta previa, placental abruption, infection, suicide, and any other causes. We also want to look at the women who survived these complications because the line between surviving and dying is in these cases, often quite thin. Every case is different and there is no one factor to blame for the maternal death rate in the US. We will look at interventions and cesarean sections, but we will also look at the lack of information available to women and the tendency of some birth activists to minimize the dangers of serious birth complications.

Current Preeclampsia/Eclampsia StatisticsMaternal mortality and morbidity are, unfortunately, a part of the pregnancy and childbirth experience for women and their families in the US and the world.  While most (99%) of maternal mortalities occur in the developing world, the 1% that occur in developed countries like the US are still of concern to maternity care providers and advocates.  Indeed, U.S. still ranks 50th in the world for its maternal mortality rate (1).

More common than a maternal death, are severe short- or long-term morbidities due to obstetric complications (2).  Some estimate that unexpected complications occur in up to 15% of women who are otherwise healthy at term (2).  

In particular, hypertensive disorders of pregnancy, including elevated blood pressure, preeclampsia, eclampsia and HELLP syndrome are estimated to affect 12-22% of pregnant women and their babies worldwide each year. (3)  Adverse neonatal outcomes are higher for infants born to women with pregnancies complicated by hypertension.  

In the U.S., upwards of 8 percent or 300,000 pregnant or postpartum women develop preeclampsia or the related condition, HELLP syndrome each year. This number is growing as more women enter pregnancy already hypertensive (cite).  Preeclampsia is still a leading cause of pregnancy-related death in the US and one of the most preventable.  Annually, approximately 300 women die and another 75,000 women experience “near misses” – severe complications and injury such as organ failure, massive blood loss, permanent disability, and premature birth or death of their babies.  Usually, the disease resolves with the birth of the baby and placenta. But, it can occur postpartum–indeed, most maternal deaths occur after delivery.

Recent statistics from Christine Morton, PhD.

The trend toward “normal” or “natural” birth does not seem to allow a lot of space for our stories to be heard or to be told. This has the effect of making survivors feel marginalized – as though their experience is somehow too far outside “normal” to be a part of the overall conversation. The one constant of all of our stories is that none of us expected to become statistics. Our birth plans did not include emergency cesarean sections, seizures, ICUs, blood transfusions, strokes, hysterectomies, CPR, prematurity, PTSD, depression, or death. No one was more surprised than us. This isn’t about assigning blame – this is about finding answers, improving birth for ALL moms to come, and learning to live with the unexpected.

Walker: How did you get involved with researching for the Preeclampsia Foundation?

JC: I started out volunteering with the March of Dimes in the spring following my son’s birth. I started a walk team and raised money, hoping that I would be able to meet other moms who had been through something similar. I felt very alone in the months following his birth. I was dealing with postpartum depression (PPD) and post-traumatic stress disorder (PTSD) symptoms and struggling to feel normal again. I had a premature infant – which meant sleeping through the night was a problem for a long time. When I returned to work, I was greeted by a coworker who declared that she now no longer wanted to have children because of what I had gone through. This weighed heavily on me – and I felt like I was the cautionary tale, the one bad pregnancy story that everyone knows. I know I had never heard a story as bad as mine – so I felt deflated, flattened by the whole thing.

With the March of Dimes, I found moms to help me deal with the preemie part of it. As he matured and grew out of the preemie issues, I found that I still had a lot of issues to deal with regarding my own health – both physically and mentally. I decided to volunteer with the Preeclampsia Foundation after they merged with the HELLP Syndrome Society.  The Preeclampsia Foundation is much smaller than the March of Dimes, which allowed me to be much more active as a volunteer. I was able to use my writing and editing skills to work on the newsletter – and when I suggested that someone do a review of the available pregnancy literature based on how well they cover preeclampsia, I was given the opportunity to conduct that research and write the report myself. This was something I had been doing informally in bookstores for a while anyway, so it felt good to be able to look at the literature and confirm that the information really is severely lacking if not downright misleading in a large number of so-called comprehensive books. It really isn’t my fault that I missed the symptoms.

This year, I am coordinating the Orange County, California Promise Walk in Irvine as part of the foundation’s main fundraising campaign on May 18. I am hoping to bring a mental health expert from the California Maternal Mental Health Collaborative out to the walk to talk to the moms about dealing with the emotional impact of their birth experiences.  Many of these moms lost babies, delivered preemies, or suffered severe health issues of their own. Our community as a whole is at a very high risk for mental health issues, myself included.

It wasn’t until this year – 6 years after the birth of my son – that I finally sought professional help dealing with the PTSD from the very difficult birth experience. I feel that the volunteer work helped fill that spot for the past 6 years and brought me to the point where I can now process the trauma in a healthy way. I am not happy that I had eclampsia, but I am beyond grateful for all of the great people that it has indirectly brought into my life.

Closing Thoughts

To have to wait 6 years to receive the vital treatment for PTSD is a travesty. We are so thankful that Jennifer survived both the initial trauma, but endured its legacy of traumatic stress that lingers today. Unfortunately, PTSD subsequent to traumatic childbirth is growing in prevalence, and under-recognized by the majority of women’s health and maternity care providers.  I have learned a great deal from Jennifer and look forward to the work she and her colleagues will continue to do for the benefit of all women.

References

1.  WHO. Trends in maternal mortality: 1990 to 2008 estimates developed by WHO, UNICEF, UNFPA and The World Bank, World Health Organization 2010, Annex 1. 2010. http://whqlibdoc.who.int/publications/2010/9789241500265_eng.pdf. Last accessed:January 3, 2011.

2. Guise, J-M.  Anticipating and responding to obstetric emergencies.  Best Practice and Research Clinical Obstetrics and Gynaecology. 2007; 21 (4): 625-638

3. American College of Obstetricians and Gynecologists. Diagnosis and management of preeclampsia and eclampsia; ACOG Practice Bulletin No. 33. Obstetrics & Gynecology. 2002;99:159-167. 

 

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