Beyond Downton Abbey: The True Life Trauma of Pre-eclampsia, Eclampsia, and Its Psychological Aftermath—An Interview with Jennifer Carney of The Unexpected Project
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
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.
|Signs and Symptoms of Pre-eclampsia
If you have one or more of these signs and symptoms, you should see your doctor or go to an emergency room immediately.
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.
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.
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.