Science & Sensibility

By Walker Karraa

Regular contributor Walker Karraa interviews Jennifer Carney, a mother of two, who suffered from eclampsia at the beginning of her third trimester.  Jennifer shares her real life story, on the heels of a favorite character’s similar experience on the popular TV show “Downton Abbey.”  Today, we learn about Jennifer’s experience and on Thursday we learn more about resources and organizations working hard to make this potentially deadly disease less harmful to pregnant and postpartum women.  - Sharon Muza, Community Manager

Introduction: 

http://flic.kr/p/dJBJhW

The recent episode of “Downton Abbey” brought much needed attention to the maternal health issue of pre-eclampsia. Why is it we rely on fiction for permission to get real? Where is the line between evidence-based research and fictional representations of the lack of it? How do we encourage each other and the next generation of maternal health advocates to harness the undeniable power of media but not become part of a social construction of maternal mortality as not real? As a qualitative researcher, I believe that some of our best evidence stems from researching real experiences from real women. It is my pleasure to introduce a real woman who experienced the full range of eclampsia and its psychological aftermath: Jennifer Carney.

Note: Consultation with Science and Sensibility contributor, Christine Morton, PhD was conducted to insure accurate and current statistical data regarding pre-eclampsia and eclampsia. 

Walker: Jennifer, can you tell us your story?

JC: My second pregnancy was easier than my first. Up until it wasn’t. I conceived as soon as we started trying. We had no soft markers on the ultrasounds, no need for an amnio, and no borderline gestational diabetes. I was only 34 and with a successful full-term first pregnancy; I was considered “safe” from preeclampsia. The only risk factor I had was my weight, but even with that, statistically my risks were much lower than for a healthy first time mom. There was something about it that seemed too easy. I felt like the other shoe was going to drop – but I never imagined that it would fall with such force.

In my 32nd week, I began to feel ill – like I had the flu. I took a day off from work to rest and recover. I thought I was getting better, but that night I began feeling worse. I called in sick to work again – it was a Friday – and my husband and son went off to work and daycare. I was alone. I laid down and slept for about 4 hours. When I awoke, I felt much, much worse. The headache radiated out from behind my eyes. I was seeing spots. I was incapable of thinking clearly. The phone rang several times, but the receiver was not on the base. I couldn’t locate it before the answering machine picked up. By this point I was aware that something was very wrong, but I wasn’t able to do anything about it. I stayed on the couch, barely moving for as long as I could.

Sometime after 5:00, I realized that I was going to have to call someone else to pick up my son at daycare by the 6:00 closing time. I managed to get to my feet and stagger toward the kitchen. I reached out to steady myself on the counter and missed. I fell to my left, onto the hard tile floor in front of the stove. I knew this was bad, but all I could think was that I had to hold on and that someone would be coming. I told myself that I couldn’t let this happen. Shortly thereafter, I tried to scream and felt the beginning of what I later learned was a tonic-clonic or grand mal seizure.  

This was eclampsia – full blown seizures caused by extremely high blood pressure. Somehow, I held on. Somehow, I held on in this state for something like 3 full hours. I have no way of knowing how many seizures I had in that time. When my friend arrived after 8:00, she found me on the floor. I came to long enough to answer her question – “yes, I know where I am. I’m fine.” I tried to get up – and immediately started seizing again. She called 911 and within minutes the paramedics arrived. 

My son was born, not breathing, about an hour later. The doctors were able to revive him, thankfully. He went off to the NICU and I was sent to the ICU. Two days later, I regained consciousness. I was on a respirator and completely disoriented. I was later diagnosed with HELLP syndrome, eclampsia, pneumonia, acute respiratory distress syndrome (ARDS), and sepsis – any of which can be fatal on their own. My son was moved to another hospital with a larger NICU, and I spent 8 days in the hospital where he was born. I saw him briefly before they transferred him – but was unable to hold him until after I was discharged – more than a week after he was born. For the next 20 days, I was only able to see him and hold him during daily visits to the NICU. It would be 4 full weeks from his birth before we could take him home to meet his 4 ½  year old brother for the first time. This was definitely not what we had envisioned.

This experience changed my entire perspective on life. It was the first significant health crisis that I had ever faced and it shook my sense of security and safety. It took a long time to recover physically from the trauma and emotionally I was just a wreck. I was aware that Post-traumatic Stress Disorder (PTSD) was a possibility, but I think the picture I had in my mind of what PTSD was turned out to be very different from the ways in which I experienced it. I had envisioned a quick, big breakdown – but the reality was much subtler. At first, I experienced an aversion to seeing pregnant women. I wanted to warn them, but I also could barely look at them. It manifested in other ways, too – dreams about seizures, muscle spasms, intrusive thoughts. But it felt manageable and the antidepressants helped control the runaway anxiety that had hampered my first postpartum experience 4 years earlier.

Photo: J. Carney 

The mental health issues were helped by the antidepressants, but I wish that I had tried therapy much sooner. It’s doing wonders for me now – but I waited over 6 years to try it. Today, my preemie is in kindergarten and doing well. Aside from my son, getting involved with the March of Dimes and Preeclampsia Foundation has been by far the best part of the whole experience. I wouldn’t change that part, at all.

Walker: How is mental health neglected in the overall understanding of the topic, treatment, and recovery?

JC: This is a huge problem. I got great care while I was in the hospital. I saw social workers, chaplains, and a wide variety of people who inquired after my pain levels and my coping skills. The problem with this is that I was on massive pain killers the whole time. Percocet and morphine can mask emotional pain as well as physical pain. I’m sure I came off as reasonably well adjusted to the whole experience, despite the mental confusion left over from the seizures and the serious health issues that remained. And I was relatively okay. Even during the month-long NICU stay, I was doing all right. I was sleeping well, eating, taking care of myself – but I was also still on Percocet. It smoothed over the rough edges.

It wasn’t until the help dried up, the prescriptions ran out, and the reality of being at home by alone with an infant to care for that the walls started to come down again. Here I was at the scene of the initial trauma, cooking at the same stove that I had seized in front of for hours, responsible for a premature infant who needed drugs to remind him to breathe. This is when I needed the help. This is when I needed information on PTSD and postpartum depression (PPD). This is when I needed support. And as I began the long process of understanding what had happened and why, I found I needed even more support to help me wrap my head around it all.

As I noted while talking about myths, there is a pervasive culture of blame in the overall birth discussion regarding preeclampsia. It can be hard to find information that doesn’t make you feel that you somehow brought this condition on yourself. I looked at the risk factors and the arguments about lifestyle, obesity, and diet – and found a lot of things that sounded like they made sense. But they only made sense if I internalized them and blamed myself for the shortcomings. Maybe it was my fault. This, as you can imagine, does not help the feelings of depression and trauma. It took a LONG time for me to come to the conclusion that there was no way for me to have known that this would happen or to have prevented it. Statistically speaking, I had a very low chance of developing eclampsia even with the risks factored in. Statistically speaking, my son and I should not have survived, either. But we did – and now I want to make sure that I use that in a meaningful way. 

Walker: Did your childbirth education prepare you for your experience?

JC: Heck no. I only took classes with my husband before our first child. We weren’t planning to take the classes again with the second, but since he was born at 7 months, we probably would have missed most of them even if we had planned to. I distinctly remember the childbirth educator talking about her own response to sleeplessness, which was a sort of slap happy, giddy reaction. She mentioned PPD, but not in any real way that conveyed the depths or potential seriousness of the condition. We also received almost no information on pregnancy complications. To me, preeclampsia meant high blood pressure – and I had never had problems with that before. It was totally off my radar. Plus, Preeclampsia very rarely happens in a second pregnancy if it didn’t happen in the first. So, no one prepared me for it. Not my doctor, not my classes, not my books.

Walker: What recommendations do you have for childbirth educators and doulas regarding this issue?

JC: Really, I think it comes down to trusting that the moms you are helping can handle the information that they NEED to know. I was alone. If I had known that these symptoms could mean eclampsia or preeclampsia, I might have been able to save myself from the seizures – which would have also likely saved me from the ARDS and pneumonia. My ICU stay might have not happened. My son was going to be born early – but if I had gone to my doctor or called an ambulance myself, it might not have been so close a call. It’s not my fault that I didn’t know – but it could have been tragic.  

Know the signs and symptoms. Know that a woman with severe PE might be having cognitive issues – confusion, and vision problems. Don’t ask her to drive. Don’t downplay distress. And take complaints of headaches, upper quadrant pain, nausea, diarrhea, shoulder pain, visual disturbances, and a general feeling that something is “off” seriously. And if you have a client or patient that experiences something like this, please follow up and ask about mental health issues. Be careful not to ask questions that can be answered with the words: “I’m fine”. Dig deeper.

Closing Thoughts

How might we increase our understanding of this issue through Jennifer’s story? Is it possible to begin a dialogue here–one in which we agree to change paradigms of learning and knowing women’s experiences beyond an episode of a fictional television show?  Jennifer presents an exemplar synthesis of the fullest range of insight possible when empirical and phenomenological considerations are employed.. Her lived experience combined with and through her knowledge of the evidence creates an exemplar of how knowing and knowledge cannot be divided if the pursuit of knowledge is truly desired.

In the next installment, scheduled for February 7th,  Jennifer reflects on common myths about PE, and her work with the Unexpected Project and the Preeclampsia Foundation.   

Walker Karraa Birth Trauma, Childbirth Education, Depression, Guest Posts, Maternal Mental Health, NICU, Postpartum Depression, Pre-eclampsia, Pre-term Birth, Pregnancy Complications, PTSD Childbirth Education, depression, eclampsia, guest post, Jennifer Carney, March of Dimes, NICU, post-traumatic stress disorder related to childbirth, postpartum depression, preeclampsia, Preeclampsia Foundation, PTSD, treatment for pre-eclampsia, Walker Karraa

In the last few weeks, several of us here at Science & Sensibility have spent time discussing various issues surrounding a woman’s experience before, during and after pregnancy, labor and birth.  We have contemplated risk factors for postpartum depression and how to survey pregnant women for these risk factors.  We have discussed fish oil supplements that can aid in averting pregnancy-related depressive disorders.  We have debated labor, delivery and postpartum milieu issues:  what’s best for mom and baby?  We have looked at the experience of midwifery care from the patient’s perspective.

In the business world, customer satisfaction surveys are incredibly important and regularly used as a means of evaluating what their customers’ experiences have been like.  In short, they illuminate how well a company is serving its customers and what can be done to improve that level of service.  The maternity care industry, it seems, is slowly beginning to take the hint.

Last week, Swedish Midwife and researcher Anna Dencker published the findings of her study, Childbirth Experience Questionnaire (CEQ): development and evaluation of a multidimensional instrument. The purpose of this study was to test the validity of a tool that might be used to, “…aid in identifying mothers in need of support and counseling and in isolating areas of labor and birth management and care potentially in need of improvement.”

Dencker’s project included developing a 22-question survey intended to pick up on signs of postpartum depression and other indications for the need of additional postpartum support, similar to the (antenatal) questionnaire referenced in Darline Turner-Lee’s recent post.  Dencker’s study, however, also involved questioning recipients about their overall experience during the childbirth process—experiences that, when deemed “negative” can have adverse effects on first time mothers’ postpartum mental health as well as “negative attitudes…toward future pregnancies and choice of delivery method.”

In fact, Dencker’s work is not the first attempt at assessing women’s childbearing experiences from the patient’s perspective and the resultant implications on postpartum well-being.

A 1999 article published in the BMJ by Harvard Medical School professor Paul Cleary (Dr. Cleary is now Dean of the Yale School of Public Health), called for increasing attention to patient satisfaction surveys.  Debunking the old assumption that these surveys cover little more than quality of cafeteria food amidst a tool of ‘minimal methodological rigor,’ Cleary goes on to state, “newer surveys and reports can provide results that are interpretable and suggest specific areas for quality improvement efforts.”  In fact, the collection and assessment of patient feedback as a tool for scrutinizing quality of care seems to be the foundation upon which Dr. Cleary has built his academic career.

As many of us know, in 2002, 2006 and 2008, Childbirth Connection, in partnership with Lamaze International and Harris Interactive distributed, collected and tallied the Listening to Mothers I, Listening to Mothers II and the follow-up Listening to Mothers II/Postpartum surveys. Groundbreaking at the time, LTMI and LTMII were the first surveys at the (U.S.) national level which allowed women to speak out about their pregnancy, labor, birth and postpartum experiences.  The results of these surveys completed either via telephone interview or online provided invaluable feedback for maternity care providers on the patients’ perspectives of their care.  More than that, they provided insight into places in which the maternity care industry can improve service—based on customer feedback.

Examples of this feedback from the LTM surveys include: a resounding theme of medical-intervention-as-the-norm during the process of labor and birth; 42% of women who wanted a VBAC were denied the option altogether; 61% of respondents planned to exclusively breastfeed following their babies’ births but only 51% were actually doing so, one week postpartum (estimates of physiologic primary lactation failure as a cause for discontinuing breastfeeding range from 2-5%, therefore non-medical causes for discontinuing nursing likely made up most of the remaining 5-8%); 3% of women who experienced an episiotomy were not given the opportunity to consent to or decline the procedure.  These are striking examples from which maternity care providers and facilities ought to scrutinize their own practices and, where necessary, make changes to better serve the needs of their “customers.”

Additionally, these surveys offered maternity care providers some encouragement to continue the good work they were doing by delineating positive reports about certain aspects of the care experienced by respondents:  2% experienced all six Healthy Birth Practices encouraged by Lamaze and 70% of new mothers attended childbirth education classes.

The LTMII/PP survey, which was sent out to 900 of the 1583 respondents who completed the 2005 survey, provided guidance for clinicians for follow-up action when and if women (in a clinical setting) gained  concerning scores on one of two postpartum depression screening tools and/or on a post-traumatic stress disorder screening tool.  In such cases, women were referred for additional psychological evaluation and treatment.

Taking action on the results of patient satisfaction surveys is the key to opening up their greatest potential value.

Let’s side step for a moment, and contemplate a metaphorical shoe manufacturing company:  This company has several brands of shoes and, within those brands, several makes and models.  Suppose this shoe company decided to survey all of its customers from the previous year—purchasers of every make and model of shoe.  Suppose the company received an overwhelming number of complaints about one of their previously best-selling shoe models under one specific brand:  the foot bed was too stiff, the heal cup created terrible blisters that caused pain and long-lasting discomfort, the toe box was cramped and unforgiving.  If this company cared at all about their financial bottom line, you bet they would either do away with that model of shoe, or make changes to it to ensure a consistent quality of product compared to other brands and models of shoes and, ultimately, ensure customer retention.  (Or, perhaps, the company would make these changes because they genuinely cared about how their customers felt while wearing their shoes.)  Because everybody does and will continue to go on wearing shoes, this company can’t afford to not respond to its customers’ feedback.  In fact, not only considering (and hopefully making) changes to this line of shoe should not be the end point.  A shoe company worth their weight in gold would also take the next step and let their customers know about their actions:  we’ve heard what you’re saying and we’re doing something about it.

Shoe manufacturing is not, of course, a life and death situation nor even a monumental long term wellness issue.  One faulty shoe design would not indicate an industry-wide failure to produce high quality shoes.

Maternity care, on the other hand, is sometimes a life and death situation–and, at the very least–an industry that does impact long term well being.  Likewise, individual faulty examples of poor care or negative patient experiences do not indicate an industry-wide failure.  However, surveys such as those referenced in this post do not function on a microscopic level.  They represent macroscopic views of a nationwide industry.

Whether we want to contemplate shoe companies, hospitals, doctor’s offices or midwifery practices as businesses, or public health service institutions, the take home point ought to be the same:  we can’t afford to not respond to our customer’s responses and we need to let childbearing women know:  we hear what you’re saying and we’re working on doing something about it.

Kimmelin Hull Healthcare Reform, Healthy Care Practices, New Research, Patient Advocacy, Research, Science & Sensibility, Uncategorized advocating for improved maternity care, Anna Dencker, Childbirth Connection, customer satisfaction surveys, Darline Turner Lee, harris interactice, Lamaze International, Listening to Mothers surveys, patient satisfaction surverys, Paul Cleary, post-traumatic stress disorder related to childbirth, screening for postpartum depression