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What I learned from experts and my bubbe while reporting on premature births

Topics in Health: Lessons From The Field

What I learned from experts and my bubbe while reporting on premature births

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(Photo by Fred Dufour/AFP via Getty Images)
(Photo by Fred Dufour/AFP via Getty Images)

This reporting project started with a comment from my bubbe, the Yiddish word we affectionately use for my grandmother.  

I was a dozen or so weeks pregnant with my second child and going in for a surgical procedure called a cerclage. Bubbe is sharp and delighted to hear any news about her great-grandchildren, but she’s also nearly deaf. So, I yelled each word into the phone hoping she’d understand: a cerclage is when doctors stich shut the cervix in the hopes of making sure the baby doesn’t come out too soon. Her response was immediate. She knew what a cerclage was. They existed 60 years ago when she was having kids. Her friend had gotten a cerclage. 

I’m not sure if I should have been surprised by this information. After all, the procedure seemed rudimentary, even medieval. Don’t want the baby coming out? Sew the opening shut! But still, I felt a bit unsettled that the best modern medicine had to offer was a procedure they’d been doing at least half-century earlier.  

My first child was born extremely premature. He arrived with no warning after just six months, weighing 1 pound, 14 ounces. He spent 123 days in the neonatal intensive care unit. His care didn’t cost our insurance and the state a half million dollars, but it came frightfully close. The hope, this time around, was to avoid a similar situation. The only way to determine if I had what is tactlessly called an “incompetent cervix” was to have more preterm births.  Doctors — even the best in their field — do not have the tools to diagnose what causes many preterm births nor do they know how to prevent them from occurring. So, they opted to stitch me shut and, basically, cross our fingers and hope for the best. 

Despite reporting on health and science, I spent the years after my first child was born studiously avoiding all topics at work remotely related to preterm births, pregnancy, and infant mortality. I feel queasy when journalists report on topics that they are too personally invested in.

While I would not touch the topic at work, my bubbe’s comment had made me curious. So, in my personal life, I quizzed every expert I encountered on why we didn’t know more about preterm birth and ways to prevent it. The answers revealed a desperation for answers — not just from patients like me, but also from the professionals. Maternal fetal medicine physicians — those obstetricians that focus on high-risk pregnancies — were enraged that they didn’t have the resources, the support, the ability to move the field forward and better help their vulnerable patients.  

It was their anger coupled with a striking lack of public awareness that convinced me to take on this reporting project. Maternal mortality had become a major topic after an NPR series that won national awards. The New York Times did a story on discrimination that pregnant women and new mothers face in the workforce. But it seemed that the only stories about preterm birth were celebratory stories about the survival of tiny babies, with no mention of the cost to society nor the long-term challenges the children would likely face. There did not seem to be any reporting on premature births that addressed the gravity of the situation — an issue that impacts a full 10% of all pregnancies in the U.S. and an even higher share for Black and Hispanic women. It costs at least a mind-boggling $25 billion a year, although experts say it’s probably a lot more. And it’s an issue that can have devastating, lifelong consequences. 

As one expert said to me: “If something like this happened to 10% of men, do you think we wouldn’t have an answer?”

I knew that if I were to take on this topic professionally, it had to be deeply rooted in data and not a story that relies simply on heart-wrenching stories of desperation. If the field really was neglected, I needed the numbers to show it, and the experts to explain it. I needed to disconnect it from my experience and let the numbers tell the story.  

As I embarked on this project, I quickly realized that there were two essential pieces to this reporting. First, I needed to find experts who not only knew the system inside and out, but also questioned the status quo. Second, I needed to use their insights to shape how I looked at the data.

Finding the experts took time. I spent many hours interviewing people with impressive titles trying to understand why so little was known about prematurity. They were all knowledgeable, but many seemed to focus their attention on only a narrow piece of the puzzle. One person told me that the main hurdle was that the most talented researchers didn’t enter this field, but they couldn’t pinpoint why that might be. Another person told me it was simply old-fashioned sexism without being able to explain why breast cancer research was so incredibly well-funded, but prematurity research was not. So, I just kept talking to people. For every person that was included in the story, I interviewed probably two or three others. As I pieced together their ideas, it became clearer what I should look for in the data. 

When I set out on this reporting project, I was focused on the dollars or lack of dollars— mostly from the National Institutes of Health (NIH) — that were put toward studying premature births. However, after a series of conversations with experts, I realized this was not the metric that best captured the problem. Instead, I looked at the number of clinical trials, particularly drug trials, that involved prematurity. This new metric was able to capture the lack of industry investment in the area in a way the NIH data I had access to did not. It also allowed me to focus on the studies that were looking at new interventions and avoid the observational studies that would not necessarily contribute to new treatment options. I also limited the studies to those happening in the U.S., after an expert raised questions about some of the international trials. These changes were a result of speaking with experts and reading academic papers in the field to understand their methodological decisions. 

What emerged was a delicate dance between the subject-area experts and the data. I would move from one to the other and then back again. I learned that the data was only valuable when it was informed by the experts, and the experts’ concerns were most valuable when backed-up by data. When the experts brought up new points, my methods for analyzing the data changed. It was a laborious process but the checking and double checking, the adjustments and readjustments made me confident in the findings and certain we were putting out new and thoroughly vetted data. It also made me confident that my personal experience was not unduly influencing the reporting.

Now, I can call up my bubbe and tell her one of the main reasons I got the same procedure her peer received six decades earlier: Because there is a massive gap in research on pregnancy in general and prematurity in specific. There are 15 times more studies on breast cancer than on prematurity, despite the burden of the disease being comparable. There are roughly the same number of studies on erectile dysfunction as on prematurity, despite the fact that erectile dysfunction does not cause long-term disability or death while prematurity can. Our society spends more resources trying to help people get pregnant than helping them stay pregnant. For every study about prematurity there are two studies about infertility. I can point my bubbe — and everyone else — to my stories, which not only quantify the lack of research but also explain why and what can be done about it.

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