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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. 

 

Birth Trauma, Childbirth Education, Depression, Guest Posts, Maternal Mental Health, Maternal Mortality, Maternity Care, News about Pregnancy, Postpartum Depression, Pre-eclampsia, Pre-term Birth, Pregnancy Complications, PTSD , , , , , , , , , , ,

Natural Childbirth – A Major Cause Of Posttraumatic Stress Syndrome?

August 16th, 2012 by avatar

By Penny Simkin, PT, CCE, CD(DONA)

In a two part series examining the recent research that stated that natural childbirth is a major cause of  Posttraumatic Stress Disorder,  our guest bloggers, Penny Simkin and Dr. David White, look at how the media may be sensationalizing the topic and reviews the published article to help understand more about what the research revealed.  Enjoy this blog post and the second part on Tuesday, August 21 to gain great insight into the statements made by the researchers. – SM

It has happened again. Yet another study of a hot topic in maternity care – this time, “natural childbirth,” which the authors define as “childbirth without an analgesia or without an epidural” – has been picked up by online and print media, and passed on to their audiences, with twists sensationalizing the material and adding fuel to the belief that natural childbirth is traumatic. Such articles bear provocative titles or subtitles, such as “Natural Births a Major Cause of PTSD”; “Having a Baby Like Being in a Terror Attack”; and “Is Natural Birth Connected with Post-Traumatic Stress in New Moms?”  Additionally, social media sites have begun discussing these frightening reports, most of which do not accurately present the study findings.

photo licensed under creative commons by megyarsh

The study causing the stir is “Postpartum Post-Traumatic Stress Disorder symptoms:  The Uninvited Birth Companion” (1), which was published in the Israel Medical Association Journal in June, 2012 but was picked up and disseminated widely only in early August. There are two major problems with this study:

  1. The misinformation and selective reporting by the media (it was attention from the media that led to my seeking the original paper to confirm the accuracy of the media statements; and
  2. The quality of the study itself (from design to interpretation of the findings to its validity).

In today’s blog post (part one of a two part series on this research article,) I will try to clarify some of the misinformation published in the media and analyze the harm done by these reports.  In part two, to be published on Science & Sensibility next Tuesday, David White, MD, masterfully analyzes deficiencies with the study itself.

At the beginning of the study, 102 women (a convenience sample) volunteered to participate in two surveys – one given within the first two to four days after birth and another at one month after birth. 89 subjects completed both surveys and were included in the results. The purposes of the surveys were to detect the prevalence of Posttraumatic Stress Disorder(PTSD,) and to identify associated risk factors before, during, and after birth. Because of the small sample size inconsistency in both reported numbers and terminology, and other factors (to be discussed in Part Two), any conclusions should be viewed with skepticism about the study’s external validity and applicability beyond the group studied.

And yet, despite these issues, the big media push has thrust this study into the limelight, giving it much more visibility and influence than it deserves. Most of the media accounts that I have read emphasize the finding that natural childbirth (meaning vaginal birth without pain medications) was the major cause of PTSD. In this study, there was an extremely high rate of cesarean birth (53%). Another finding reported by the media was that being accompanied during labor had no impact on the rate of PTSD. Neither of these findings was accompanied by statistical evidence.  These and other findings of the Israeli study are contrary to those of numerous other studies and reviews of satisfaction with childbirth, PTSD after childbirth, and the role of pain vs suffering during labor (2-4). Close examination of the details of the Israeli study design and reporting is called for, even though the damage has already been done by the media. Please see Part Two of this blog on Tuesday for this careful analysis.

Participants were questioned about the prevalence of PTSD symptoms after birth, and also about the presence of pre-pregnancy, intrapartum, and postpartum factors that are known to be associated with post-birth PTSD. Natural birth was highlighted by the media because of the report that 80% of the 7 women who developed PTSD (5 women) did not receive pain medication. In fact, many media reports state that these women either chose or opted for natural childbirth without pain relief. On careful inspection of the original paper, nowhere does it state that the women chose natural birth, but rather that “… fewer women who developed PTSD symptoms received an epidural and there was a great incidence of PTSD symptoms in women who did not receive an epidural.” It is possible that an epidural was not available to the women (which could be traumatizing if they had wished to have one).

Furthermore, these women had numerous other factors that are associated with PTSD. Before accepting natural birth as the major cause of PTSD after childbirth, please check the table below for these other factors, which were as prevalent, or nearly so, as lack of pain relief as a cause of PTSD. As you can see, for example, 80 percent of the women with PTSD also had discomfort with being undressed; previous mental health problems in previous pregnancy or postpartum; and complications, emotional crises, and high fear of childbirth in their current pregnancy.  All these factors have been reported in many studies to be instrumental in the development of PTSD (2-4).

Selected PTSD Risk Factors (with large differences in incidence between the two groups)

Existing before the study pregnancy P Value PTSD (n=7) No PTSD (n=82)
Psychiatric or psychological treatment P=0.157 60% (n=4) 29.8% (n=24)
Body image (uncomfortable in undressed state) P=0.014 80% (n=4) 27.7% (n= 22)
Existing in previous pregnancies      
Traumatic birth experience p=0.012 60% (n=4) 15.5% (n= 12)
Sadness, blues, or anxiety during or after pregnancy p=0.038 80% (n=4) 33% (n= 26)
Existing in current pregnancy      
Complications during p= 0.016 80% (n=4) 28.6% (n=25)
Emotional crises during p= 0.06 80% (n=4) 23.8% (n=21)
High fear of childbirth p= 0.021 80% (n=4) 30% (n= 27)
Delivery      
“A significantly smaller number of women who developed PTSD received analgesia during delivery compared to the control group” * p=0.000 No numbers or % given No numbers  or % given
Mothers’ Feelings in Labor & Birth     No PTSD (n=80)
Felt danger to their life or health p=0.001 71.4% (n=5) 20.7% (n=17)
Mild discomfort with undressed state p=0.029p=0.029 57.1% (n=4) 87.7% (n= 70)
Major discomfort with undressed state 42.9% (n=3) 12.3% (n= 10)
Support during labor      
No relationship between PTSD and being accompanied by someone or the extent of support received. No numbers or percentages were given.

*  This statement was all that was given to support “evidence” of natural birth as a cause for PTSD.

In spite of the flaws of this study, the authors offered some valuable conclusions, pointing out “the importance of inquiring about previous pregnancy and birthing experiences and the need to identify at-risk populations and increase awareness of the disorder.” Despite the shortcomings of their study, this advice is on target, as has been confirmed over and over again in the literature on traumatic birth.

In conclusion, this study was given much more publicity than it deserves, and as such has done more harm than good in understanding PTSD after childbirth. Our lesson: Recognize that many media outlets look for sensational and shocking material to attract readers, and will manufacture it if it doesn’t exist. Go to the source and think for yourself.

As educators and  birth professionals, how do you deal with students, clients and patients sharing what they read in the media, that may have been sensationalized?  What is your response?  Have you had to field questions about this recent study?  How do you respond?  Did you come to your own conclusions about this study?  Please come back on Tuesday to read a wonderful review of this research by Dr. David White and continue the discussion. – SM

Resources:

1. Polachek I, Harari L H, Baum M, Strous RD, (2012) Postpartum Post-Traumatic Stress Disorder symptoms: The Uninvited Birth Companion. Israel Medical Association Journal 14: 347-353

2. Alcorn K L,  O’Donovan A, Patrick J C, Creedy D and Devilly G J. (2010). A prospective longitudinal study of the prevalence of post-traumatic stress disorder resulting from childbirth events. Psychological Medicine, 40, pp 1849-1859 doi:10.1017/S0033291709992224

3. Alder J, Breitinger G, Granado C, Fornaro I, et al. 2011. Antenatal psychobiological predictors of psychological response to childbirth. Journal of the American Psychiatric Nurses Association 17(6): 417-425. doi: 10.1177/1078390311426454

4. Simkin P, Hull K. 2011 Pain, Suffering and Trauma in the Perinatal Period. Journal of Perinatal Education 20(3): 166-175.

For more information visit the PATTCh Resource Guide.

About Penny Simkin

Penny Simkin is a physical therapist, childbirth educator, doula, and birth counselor. She is author or co-author of many books and articles on maternity related topics for both professionals and the public. She is a co-founder of DONA International, and of PATTCh (Prevention and Treatment of Traumatic Childbirth), and is also a member of the Editorial Board of the journal, Birth.

Childbirth Education, Depression, Guest Posts, Maternal Mental Health, Perinatal Mood Disorders, Postpartum Depression, PTSD, Research, Social Media, Uncategorized , , , , , , , , , , , ,