OHSU Hospital, 2019.
Courtesy of Oregon Health & Science University
A third of stillbirth deaths go without answers to why they happen. As reported by ProPublica, researchers and maternal health groups are calling for doctors and hospitals to offer post-mortem examinations. These can include assessments such as placental exams, genetic testing and autopsies. These tests are often able to determine a cause of death, or at least eliminate one that may be suspected. But data from the Centers for Disease Control show that only 60% of stillbirths had a planned placental exam and only 20% had an autopsy planned. Karen Gibbins is an assistant professor of Obstetrics and Gynecology at OHSU and has published research on stillbirths. She joins us to share what we know about stillbirths and how examinations could give us a better understanding of why they happen and how to prevent them.
This transcript was created by a computer and edited by a volunteer.
Dave Miller: From the Gert Boyle Studio at OPB, this is Think Out Loud. I’m Dave Miller. Researchers and maternal health groups are calling for doctors and hospitals to offer more autopsies and more postmortem examinations of placenta. That is according to recent reporting by ProPublica, which found that in one third of stillbirths the cause of death is not known. Karen Gibbins is an assistant professor of Obstetrics and Gynecology at OHSU. She has published research on stillbirths and she has her own personal experience with this loss. She joins me now. Thanks very much for making time for us.
Karen Gibbins: Thanks so much for having me.
Miller: Generally, how common are stillbirths in the US right now?
Gibbins: In the United States, stillbirth occurs in about one out of 170 births. So that rate is about 5.7 per 1,000. The highest rate is in Mississippi and the lowest is in New Mexico.
Miller: How does the US compare with other developed countries in these numbers?
Gibbins: With a lot of things having to do with reproductive health, it will not be surprising to hear that we’re not doing great. Countries like the Netherlands, Denmark, Iceland, Sweden, are doing far better than we are. A lot of this has to do with our healthcare system, with institutional racism and all the other reasons that we struggle with maternal and perinatal health in this country.
Miller: Just to be clear, in terms of terminology here, what’s the dividing line between a stillbirth and miscarriage?
Gibbins: It’s a little tricky to answer that, actually. In our country we use 20 weeks gestation as the dividing line. However, that’s a bit arbitrary. In some countries 28 weeks is sometimes used, because the thought is that babies born before 28 weeks in countries without advanced neonatal resuscitation care, those babies would not survive. And so you’re not considered a stillbirth until you’re survivable to some degree. However, using 20 weeks in the United States doesn’t quite follow those rules because we don’t offer resuscitation until usually 23 weeks of gestation. And the truth is when you look at causes, a 19 week loss is very similar to a 22 week loss, but they’re going to be coded differently in records. So the short answer is 20 weeks is considered a stillbirth, but the real answer is a bit longer and more complicated.
Miller: What are some of the most common reasons for stillbirths?
Gibbins: Placental conditions are quite common. They are the etiology of stillbirth in about one out of four cases in this country. There can be obstetric reasons, things like cervical insufficiency that lead to people delivering before the fetus or the baby is at a point where we can offer resuscitation and help them to survive. Infections can be a cause, there are a number of genetic and structural abnormalities that can lead to stillbirth. Rarely, umbilical cord conditions can lead to stillbirth. And then there are things having to do with conditions that the pregnant person might have, like diabetes that isn’t under great control. Smoking is a risk factor for stillbirth. There can be environmental exposures as well. And then often we just don’t know.
Miller: Is it possible to even estimate the percentage of stillbirths that might be preventable?
Gibbins: Yes and no. One of my colleagues, Dr Jessica Page, led an analysis of an american database of stillbirths, trying to answer exactly that question. And how you define “preventable” is quite complicated. She took the stance that if it’s something that we could give, some sort of treatment, that could potentially improve the outcome, she called that preventable.
So that included things like babies who were growth restricted and we know that growth restriction isn’t a risk factor for stillbirth or diabetes that was under poor control. We could do a better job of helping people have better glycemic control or blood sugar control. In her analysis, she estimated that about 20-25% were potentially preventable. However, she also defined that, if we had more research in these areas, maybe we would have the tools to prevent them.
Miller: So it’s not as clear as, if we’d known everything that is currently knowable we could have prevented these deaths. It’s a more complicated projection than that.
Gibbins: It’s more complicated, and certainly there are stillbirths that occur in the United States that are preventable and that from a systemic approach, we need to do a better job. And there are stillbirths, that if we learn more, do more research and figure out some better tools, they could also be preventable.
Miller: What can pathologists do to learn why a stillbirth might have happened?
Gibbins: There are a couple of different things, and the first is to do a detailed examination of the placenta, both by looking at it and cutting it up and looking at it under a microscope. And they can see how that placenta developed, damage that may have happened to the placenta, infections in the placenta. And all of those give clues to why the stillbirth happened.
Miller: Maybe this is too basic for many of our listeners, but probably not for all of them. Just as a basic reminder here, why is it that problems with the placenta can be so serious?
Gibbins: Oh, good question. So the placenta is this really cool organ that develops during pregnancy that essentially connects the pregnant person’s bloodstream to the fetus’s. And there’s an exchange of oxygen across the placenta and the nutrients that are necessary for the baby to grow. Any sort of waste products that are potentially toxic, that the fetus develops through its metabolism, then goes back through the placenta to the pregnant person’s bloodstream, and then can be disposed of through the usual ways. So if the placenta either developed abnormally or is damaged and thus malfunctioning, you can either have insufficient nutrients and oxygen, which is obviously a problem. Or you can also have abnormal clearance of waste products as well, which is also a problem.
Miller: So, in a sense, we can think about it as a kind of external version of a lot of important organs that a non fetus would have. And if so, if there are serious problems with placenta, there are likely going to be very serious issues for the developing baby.
Gibbins: Absolutely. The placenta is acting as the developing baby’s lungs, kidneys, other organs as well, but those are the biggest ones.
Miller: And then, as you noted, there’s also stillbirth autopsies, which I guess are a more obvious examination of a body to see what has happened. How common are these two kinds of examinations: autopsies and looking at the placenta?
Gibbins: Looking at the placenta varies from state to state, it happens most of the time, I would say. The challenge in getting a good placental examination is less [about] having it sent or having it suggested by a provider, and more [about] who’s doing the examination. There are different levels of training for pathologists with regards to the detail with which they might look at a placenta. So there are perinatal pathologists, who do an additional fellowship specifically looking at early pediatric pathology as well as placental and fetal pathology. And if you are in a system where one of those individuals is doing the examination, it’s going to be usually more useful and more helpful in figuring out the cause.
Miller: Because they really know what to look for . . .
Gibbins: They really know what to look for. And it’s being revised very frequently, but there are some guidelines about how to “in detail” examine a placenta and what to report out and where you can and can’t draw conclusions. Pathologies are a really, really broad field, and a perinatal pathologist wouldn’t be able to look at cancer in the same way that a cancer pathologist would. So everybody’s got their unique set of training and perinatal pathologists are just a little hard to come by.
Miller: And is it the case, as it is in a lot of specialties, that the closer you are to a bigger city, the closer you are to a large academic hospital, the more likely it is that there is somebody with this specific training that’s going to be able to to provide that level of care?
Gibbins: 100%. Placental and perinatal pathologists often gravitate towards large academic centers, and this applies to autopsy as well. There are a number of connections with community hospitals where arrangements are made to send specimens to academic centers and that goes for all sorts of pathology situations. But if you’re not in a situation where those arrangements are already in existence, it can be hard to coordinate that care.
Miller: Are autopsies or placental examinations paid for by Medicaid? Are they normally covered by private insurance?
Gibbins: Not typically. It depends kind of how your pregnancy care had been paid for. Insurance is a little bit beyond my area of expertise, but there’s a couple different ways that pregnancy care is paid for. One is “bundled care” where essentially prenatal care, delivery care and postpartum care are paid for in one bundle. And then it also can be a little bit more ad hoc and autopsy is not considered part of the bundle. Placental pathology often is, but autopsy is typically not. So some hospitals decide that in these relatively rare situations that are obviously incredibly tragic, they will simply cover the cost and a patient will never see a bill for it. But that’s not true in all hospitals. And so cost can be a limiting factor for these things.
Miller: As I noted in the beginning, we’re talking to you not just because of your clinical and research experience, but also as somebody who had a stillbirth, yourself. Does that mean that you were given a choice about whether or not to go forward with an autopsy?
Gibbins: Yes, it absolutely does. Before I experienced my own stillbirth, which was in 2018, I was already a stillbirth researcher and my niche in clinical care was individuals and parents who had experienced stillbirth. So there was a deep irony to it. I also knew, personally, the perinatal pathologist who I knew would be doing my autopsy. So I was in a very unique situation to have all of that information already available to me. So it was honestly kind of a no brainer for me. I had no idea why it had happened and I knew that this was part of a complete work up. So I went for it.
Miller: What, that you learned from that autopsy, affected your future choices?
Gibbins: It was very surprising, but we learned from this autopsy that I have a rare condition called gestational autoimmune liver disease, where my body makes antibodies that attack a growing baby’s liver. And we would not have known that at all, if not for the autopsy. It’s the sort of condition that typically gets worse and worse in each subsequent pregnancy. So all future pregnancies would be affected. And there is a fairly good treatment. It’s a quite intensive and miserable treatment, but it usually works, meaning you usually have a baby who survives. And so we were able to know that that’s what caused my stillbirth. And in my third pregnancy I underwent this treatment and that baby is three and a half [years-old].
Miller: Congratulations.
Gibbins: Thanks.
Miller: Turning back to broader questions, let’s say that money and staffing were not an issue. I’m wondering if the trauma of stillbirth could be another barrier to an autopsy. I mean, when people are grieving the loss of a child, is it hard to convince them to have an autopsy performed?
Gibbins: Absolutely. And I also wouldn’t necessarily use the word “convince”, just to reframe it a little bit. We know that getting an autopsy in the setting of a stillbirth gives useful information to about 30 to 40% of families. And that information can be like mine, some sort of autoimmune condition. It can be that there was an infection. It can be that there’s a genetic condition that maybe has a risk of happening again in future pregnancies. And that can be really useful information for helping future pregnancies, for bringing closure. And there are some families who, even if they knew and understood all of that, the thought of their baby undergoing an autopsy is just too upsetting and they don’t want that. And if this is not the right answer for them, if that’s not information that they want, then I don’t want them to be convinced into an autopsy.
But one of the challenges is that we as providers are not great at this counseling. In general, OB-GYNs and midwives don’t go into obstetric care because they want to take care of people in stillbirth. They’re usually more about the happier outcomes. In this society, everybody’s pretty uncomfortable with death and not great at dealing with people in acute grief. And that’s true of doctors and midwives as well. So often, there’s a knowledge that you should offer an autopsy, but if you tell someone, “your baby is dead, we need to deliver you, do you want an autopsy?” They’re gonna say “no.” Of course they’re gonna say no. They’re in total shock, and that sounds even more traumatic than the trauma that they’re already going through.
So part of my goal is to help train trainees and colleagues in how this can be better approached; with decision aids, with gentle conversations. Not in that initial diagnostic moment, but after families have had a moment to start that process of grieving. I’ve had a number of experiences where someone else had kind of gone through that knee jerk, “do you want an autopsy counseling?” and gotten a “no,” or “we don’t think so.” And I’ve gone in and asked if it’s okay to have another conversation about that and people almost always say “yes.” And then, if I sort of talk through what an autopsy is, what information it can provide, the way the incisions are made…
You can still have an open casket funeral if that’s what your plan is, you can choose different parts of an autopsy that maybe could match your level of comfort better. Often people end up saying, “yeah, that is information I want,” and “thank you for coming back and talking to me about this.” So we need to get better at our counseling and to do it in a trauma-informed approach.
Miller: Karen Gibbins, thanks very much for your time today. I really appreciate it.
Gibbins: Thank you.
Miller: Karen Gibbins is an assistant professor of Obstetrics and Gynecology at OHSU.
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