How medical records helped one journalist find out what went wrong during her daughter’s birth

After my recent series of posts about helping patients walk through their own medical records, I was contacted by Joy Victory, a longtime health care news editor. Joy had written about the high rates of maternal mortality in the United States and her own experience with nearly losing her own life shortly after childbirth. I decided to interview her about how she acted both as patient and reporter in investigating her own case as a way to illuminate some of the steps necessary to tell a compelling story while using health care records. The first part of the interview is below. The second part will run next week. It has been edited for space and clarity.

Q: You had a scary experience with preeclampsia, a condition that leads to a dangerous rise in blood pressure, which is something that a fair number of women have had to go through in their pregnancies. And you did something that I haven’t often seen. You wrote about it in the context of the significantly higher rates of maternal mortality in the U.S. compared to other economically advanced countries. Why?

A: Because I got very close to the edge. Three days after delivering my daughter, I approached a state known as “imminent eclampsia” before I was finally thoroughly examined and treated, even though I had clinical signs for weeks before that. Imminent eclampsia is when a woman has neurological signs of an impending seizure. Once I got home from the hospital, and started researching what happened to me, I realized I wasn’t alone. Many women like me were going through what I went — and also dying.

Q: You described yourself to me once as being “naïve” before you actually had an experience in a hospital. Why did you say that?

A: I had heard many times that our health care system is “broken.” I didn’t fully realize what that meant until I received such incredibly chaotic and dangerous care — yet was basically powerless, especially as I got sicker and more sleep-deprived and my ability to make decisions and speak up for myself was impacted.

Q: When you were in the middle of your childbirth experience, you probably weren’t thinking about anything other than the health of your baby and your own health. When did you start thinking about writing about that experience?

A: I had made two trips to the hospital when I was in labor. The first time I was told that I was “too early” into labor, and sent home — even though I vaguely remembered weeks later that I had had arrived at the hospital with abnormal vital signs. I needed to ask for copies of what is known as the “triage chart” from the hospital to confirm my suspicions that they had turned me away even though I had high blood pressure and tachycardia — both signs of preeclampsia. My actual memories of those trips to the hospital are very fuzzy — because I was so sick at the time, and in labor. But once I got that chart in my hands and saw all the exact vital signs and lab work, I knew the hospital staff had gone against standard protocol and sent me home in a dangerously ill state.

When I went back to the hospital the second time, I was covered in vomit. I had meconium leaking out of me. (That’s a bowel movement from the baby.) My water had broken while I was vomiting, and my baby was in distress. My blood pressure was severely high. That time they admitted me right away — but again, treatment for preeclampsia was delayed. I got an epidural almost immediately. It is well known that epidurals lower blood pressure, sometimes too much. In my case, I could see on my chart how the epidural made my blood pressure temporarily normal. I think this may have given the staff a false sense that my blood pressure was normal over all, though I never had confirmation of that.

So, it wasn’t until after my baby was born — three days later — that I was told “we think you might have some sort of preeclampsia.” And it wasn’t until I got home from the hospital many days later and called into report my postpartum high blood pressure that the OB-GYN now managing my care told me I had had severe preeclampsia while I was in the hospital. The word “preeclampsia” never appears in my hospital chart. Instead, the constellation of symptoms are listed without explanation: hypertension, tachycardia, elevated liver enzymes, anxiety, hyperreflexia, etc.

Q: Have you found other women like you who have explored their own experiences to illuminate bigger problems with the health care system?

A: I recommend this post from pediatrician Dr. Tricia Pil. It juxtaposes her maternal medical chart with what was happening and also the hospital's response to her queries about why she was treated the way she was.

Q: You talked with Rebecca Vesely at AHCJ at some point about your experience. What was that conversation like?

A: She covers health care information technology. She was surprised to hear some of the things I shared about my maternal medical records. For example, how much of my record was obviously just pre-written notes that nurses have to input before they do a shift change — and never actually happened. According to my record, about six different nurses discussed Kegel exercises with me! That still cracks me up. This was because they kept putting me into the discharge pipeline, since I had arrived at the hospital with no diagnosis or extra care and they love to get moms out of there 24 hours after delivery. But by day two, my labs and vitals were not recovering, so they’d change their minds about what to do with me. Again and again that would happen each day, and each decision would often involve a room transfer, and all the fallout that that entails.

Next: Joy breaks down how she went about getting her medical records and how she pieced her story together.