Accreta Expert Series:
Dr. Brett Einerson
“Accreta Expert Series” is a National Accreta Foundation produced interview series that showcases the researchers, providers and public health experts who are leading the way in advances related to the pregnancy complication placenta accreta spectrum.
Accreta Expert: Dr. Brett Einerson, MD MPH
In October 2021 in honor of Accreta Awareness Month, Dr. Brett Einerson, MD MPH joined NAF for an engaging live presentation on placenta accreta spectrum followed by an interview and community Q&A. Discussion topics included who is at risk of accreta, the importance of pre-delivery diagnosis, why you should get a second opinion and how better outcomes are achieved by receiving care from a multidisciplinary team at a hospital that has experience treating accreta.
Viewers joined via our Facebook and YouTube channels to watch the live presentation where they were able to participate by posting their own questions and comments real time throughout the live stream event.
watch the recording:
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Brett Einerson, MD MPH is an Assistant Professor and Maternal-Fetal Medicine physician in the Department of OBGYN at the University of Utah in Salt Lake City. He is the Director of the Utah Placenta Accreta Program, one of the busiest accreta referral centers in the country. His research focuses on the prevention, prediction, diagnosis, and surgical management of placenta accreta spectrum disorders. His other research interests include value-based obstetric care and cost-effectiveness, obstetric hemorrhage and transfusion, and patient safety and quality of care. In 2020 and 2021 he was the director of the SMFM Placenta Accreta Scientific Forum. He currently serves as one of the founding members of the Board of the Pan-American Society for Placenta Accreta Spectrum (“PAS-squared”), a multicenter, multinational accreta research and education organization.
ACCRETA EXPERT SERIES
”Accreta Expert Series” is a National Accreta Foundation-produced interview series that showcases the researchers, care providers and public health experts who are leading the way in advances related to the pregnancy complication placenta accreta spectrum. Join us via our Facebook and YouTube channels to watch the live presentation and participate by posting your own questions and comments real time throughout the live stream event.
The following is a lightly edited transcript of the interview and Q&A portion of the recording:
Dr. Brett Einerson:
I'm delighted to be here. Thanks for the invitation.
Kristen Terlizzi:
Awesome, then we'll go ahead and get started. I've got a few questions for you before we dig into your presentation, and I'd love to give our audience just a little more information about your background. Where is it that you practice?
BE:
I'm at the University of Utah in Salt Lake City.
KT:
And about how many accretas do you see a year?
BE:
I see consults for about 60 to 70 patients who think they may have accreta, in addition to doing quite a few telephone conferences with doctors from other parts of the country to get their advice on whether or not they should send that patient to me.
KT:
And how has the amount of accreta cases that you see changed over the years?
BE:
We see significantly more today than we saw five years ago. And that's way more than we saw 10 years ago, the incidence of this problem is really increasing. And thankfully, the awareness of the community of this problem is increasing somewhat
KT:
I'd love to hear a little bit about your facility and how you address the complexity of an accreta delivery from the patient experience standpoint. So kind of outside of the medical care aspect of treatment, how do you support these moms and families?
BE:
When I meet moms, it's usually somewhere in the middle of their pregnancy, they've already gotten some pretty concerning information about what's going on with their pregnancy. And I'm oftentimes sort of their point person at the University of Utah. I tell them, there's nothing magic about me. But there's a magic in knowing that 10 or 12 or more doctors and other practitioners are thinking about them, taking care of them, and trying to meet all their needs through the process. And so that first visit with me is just about clarifying what is going on inside of their body. And whether or not I think they need to be worried about placenta accreta. And what the treatment options are. We then set them up with a specialty Imaging consultation if we haven't already gotten that done. And have them meet with our anesthesiology team to go through sort of the nuts and bolts of what it's going to mean to potentially be awake for part of the delivery and then asleep for part of the rest of the surgery. We connect them with social workers because we know that this is a problem that affects the mental health and well being of patients and families affected by placenta accreta. And so right from the beginning, we connect them with our clinical social worker who serves as a point person for mental health needs. That person can also connect them with the resources that we have in terms of housing, a lot of my patients come from 5-10 hours away. And so they get a care coordinator to help them move closer to Salt Lake if they need to or deal with the difficulties of living far from their family. And so we have a little team that we set up and that sort of patient experience when they come to University of Utah before they have their delivery.
KT:
That's wonderful to hear how much you think about the complexities. Accreta is such a difficult diagnosis and experience [it’s critical to address] more than just the medical side of the complications but also being there to support these women and families is so meaningful. One area of accreta experience that's often overlooked is postpartum. I'd love to hear about how your practice handles postpartum support for moms.
BE:
I think postpartum support starts even before delivery and recognizing that [an accreta] delivery and postpartum experience is going to probably be different in a number of ways. Some moms and parents haven't experienced prematurity as an issue. We address that up front to try to get them prepared for it, we have them come to the NICU and see what it's going to be like when their baby is delivered. We talk through the scenarios of what is likely to happen during their surgical care and try to prepare them as much as possible for when they wake up from their surgery. The postpartum resources that we have specifically: we have more frequent visits in the doctor's office with patients who have survived placenta accreta, they have different needs than if you've just had a C section or a vaginal delivery. And so we check in a lot more frequently, we usually have at least a visit or two in the first two weeks to make sure that people are healing well, and psychologically that they're adjusting. We also provide, we're lucky enough to provide housing for moms whose babies are here, and they don't live close by and so that is a resource available to them. And then we try to be as proactive as possible connecting them with social workers and psychologists who can help with the long term mental health problems that sometimes come along for patients who have dealt with placenta accreta. That's in direct response to stuff that we learned through research here, we recognize that moms were not getting an adequate support team for their postpartum stay. That's been a big push for us in the last couple of months to improve that care.
KT:
That's wonderful to hear. [For] so many women in the accreta community, this experience lasts with them for so long, both from a physical standpoint, and just in processing and understanding their experience. Being there to support them is such an important part of the accreta experience. I want to move on a little bit to your interest in accreta. You touched on this a little bit earlier, do you think that placenta accreta gets as much attention as it should?
BE:
I think it's under recognized, it's misdiagnosed probably in some cases, and it's definitely in a lot of cases under diagnosed until delivery. In some cases may be over diagnosed just because there's a sticky placenta doesn't mean that it's necessarily a placenta accreta spectrum. So it's confusing. Because it's confusing, not just to patients, but to doctors, I think that it doesn't really get the attention that it needs to. You would think that something that is the reason for the highest number of unexpected hysterectomies at the time of delivery would get the attention its due. But so far, I think our country has focused a little bit more on other more common causes of major morbidity, and even death. And I think now is the time for our community to really reach out and to bring accreta to the forefront. Because I don't think that enough doctors are thinking about it. I don't think enough patients hear the word when they develop the risk factors. And I feel bad that that's the case.
KT:
That's so true. So many women, myself included, who have clear risk factors for accreta never even hear the word until we're diagnosed with it. That's something we're very passionate about at National Accreta Foundation: getting the word out helping those who could be at risk of it, and really just generating more [accreta] awareness throughout the community. How did you end up focusing your career on placenta accreta spectrum?
BE:
You know, it was a little bit circumstantial, I came to University of Utah looking for an adventure and really good training in high risk pregnancies. I always was attracted to taking care of very sick moms like moms even that end up in the ICU. I was very attracted to that because it felt important. It felt like a place that was oftentimes unexpected. I knew I wasn't going to be a doctor who just did ultrasound and saw patients in clinic but then didn't take care of patients in the hospital. I loved taking care of families facing really the most dire situation you can possibly imagine having a sick mom in the hospital. So when I came here, I got exposed to this problem that really encapsulated that perfectly. This is something that a lot of people don't understand. This is something that is life threatening. This is something that is terrifying for patients. And well it sort of sounds weird to say this, and some people look at me sideways when I say stuff like this, I like being that person to be able to walk people through just totally uncharted territory for them. And I sometimes think of myself as like, a navigator or a guide, through the desert. I mean, people hear this diagnosis and they're lost. They need somebody to help them find the way to safety. And that's kind of the role that I see for myself and accreta, as there's no better thing in the world than accreta to be that person.
KT:
That was wonderful. That was so eloquent and heartwarming. Thank you so much. As patients, that's exactly what we need. It's terrifying to get diagnosed with accreta and have to understand what the condition is, what it means for you and oftentimes have to make major life adjustments like going to a hospital hours away, potentially being separated from our families. Having someone who can be that grounding force and help guide [patients] through is such a valuable thing. Thank you so much. I'd love to hear, I think maybe you just kind of preempted me, with the most gratifying, rewarding part of your role. But if you have anything you wanted to add, we're happy to hear it.
BE:
I think that there's a lot that's really gratifying. Probably the most gratifying thing is talking with patients after it's all gone down and after they go home with a healthy baby and a healthy mom. And that isn't the case for everybody. Sadly, not every patient brings home a healthy baby. And not every patient has an uncomplicated course. But even when the best possible outcome doesn't happen, I love having those postpartum visits with patients and families to talk through how things want to see how they're doing to check in and just to feel like we made it from the super scariness and uncertainty of before to a little bit of stability afterwards. And finally, some light of day and seeing that sort of fog lifted from the faces of patients that have just been living in that terrible area of uncertainty and then just get through it and to see just a glimmer of hope for the future on their faces really makes my day
KT:
I want to call you out, you said something that I really appreciate. You said, we make it through, we will get through. I think that's such an important part of the accreta experience is making sure these moms don't feel alone. Placenta accreta can be such an isolating diagnosis and something that is so unusual that people haven't heard of. So really making sure that this woman knows that not only does she have her family and friends to support her, but also medical professionals like yourself. Now, what is the hardest part of your role?
BE:
I haven't personally experienced a mom who's died under my care from this. But I know that if I practice long enough, that's going to happen. And so just even the wondering about if that could ever happen weighs really heavy on my heart. And even though I know it's a team effort, it's 10 doctors, it's a team. It's a lot of good fortune and making good decisions all put together. I do just really sort of dread that time when or if that happens, and that's the worst case scenario really that drives a lot of the protocols that we develop in the care that we give, because I hate the idea that you know, somebody would [potentially] come into my care and not make it out on the other side. So it really drives me to lead our team to provide the best possible and safest possible care so that we don't have to experience that if we don't have to.
KT:
With that actually I'd like to propose that we hold a brief moment of silence to pay our respects for those accreta cases that did not work out with happy endings. I know that I see here in the chat, we've got Jackie George here from the UK and I know many of us are familiar with her daughter's story. And there are definitely others in the accreta community that we pay tribute to as well.
KT:
Okay, with that I'd like to move on a little bit, what advice do you have for a woman who's newly diagnosed with placenta accreta?
BE:
My best advice is for patients to reach out and get as much support as they possibly can because this is an isolating place to be. There is so much uncertainty associated with this diagnosis even if you are getting the best possible care. Any doctor worth his or her weight in gold is going to tell you that there's a lot of uncertainty about what's going to happen, we don't know when delivery is going to happen, we can't guarantee the safest possible outcome and living in that space is really dark. And the only way to get through it is to connect. My advice to patients is to connect. Connect with your provider if that's something that works for you, connect with resources through the clinic, if that's psychological or or support group. Connect with the National Accreta Foundation, other patient advocates. I offer most of my patients a couple of things that NAF helps to coordinate, one is the letters that survivors send to my patients. And that's an important part of connecting. I offer them the website resources that you guys have, which are amazing. And finally, even though there's some overlap here between the NAF website, and my patient pool, I offer them direct connections to other accreta survivors that have actually had our team, had our doctors, be their doctor team or be their team for accreta care. And I think that's the best way you can get from the uncertainty and the darkness of an accreta diagnosis, to finding some hope for the future and to look for reassurance and some certainty in a super uncertain position.
KT:
One thing we hear a lot about is the importance of the facility where the woman who has placenta accreta, or is suspected of having accreta, is the hospital that they choose for where they deliver. What advice do you have for women in assessing their facilities’ capability in managing accreta?
BE:
I've got a nice slide in my presentation about what you can do as a patient to look for signs that you're getting good care, I've got another slide just with questions that you can ask your provider to suss out whether or not it's a good situation for you there. It is incredibly difficult to know what quality of care you're getting for accreta. The differences between even really great places are huge in terms of the approach to treatment and diagnosis. There's not enough research for there to be standards for quality in our field yet, that's a lifetime goal of mine to help set those standards. But what patients can do is try to have as open and honest conversation with their doctor as possible to try to understand the resources that are available. Ideally, the place where you're going to deliver is going to be a place that can take care of really heavy bleeding, because that's the most common complication. The way that you might ask about that or know about that is does your hospital have an adequate supply of blood, just in case things get really bloody. I don't want to preempt my slides too much. But I do also think that busier hospitals generally have more of that capability. So if you are delivering in a hospital that only delivers a few hundred patients a year, they're less likely to have all of the resources that they need than if your hospital delivers, you know, 3,000 - 5,000 - 10,000 patients a year. This not a hard and fast rule. But the smaller and less busy hospitals generally have fewer resources to be able to manage accreta. You can look up those numbers, ask for them and then have open and honest conversations with your provider. If those conversations don't come, look for a second opinion.
KT:
I'm so excited for your slides. I know I know. I've heard about them, so I can't wait to see them. I did want to get in a fun question or two as well. I was curious. What job would you have if you weren't a surgeon?
BE:
I don't know if I want to share this with you. I think I would write poetry. I would just move to the middle of some canyon somewhere and be introverted and write poetry.
KT:
That's amazing. What would people be surprised to know about you?
BE:
Besides that? I think people would be surprised to hear that I don't work past dinnertime ever. There are a few circumstances like I owe National Accreta Foundation some slides, so I better get them done. But 360 days a year, I don't work past dinner. And since I started doing that a couple of years ago, it has totally changed my life in a positive way. It makes me a better dad, it makes me a better doctor. And it makes me more effective at work.
KT:
That's amazing. Life lessons for Dr. Einerson here. In case you guys missed it in the text field, I saw Joree did a little shout out: “Leave your haikus for Dr. Einerson in the comments.”
BE:
Please, please. I'd love to read them.
KT:
Without further ado, we would love to see your presentation. Thank you so much.
BE:
I first want to just start with a story. I want to tell you a little bit about Wendy, she's a patient that I met who lives many hours from Salt Lake City. She came to me on her eighth pregnancy, she had a C section and then six VBACs. So she and her doctor had done everything right to try to prevent accreta. But on her eighth pregnancy she was unlucky to have a placenta that attached down by her only C section scar. When she came to me, it was pretty evident that things looked pretty bad on the ultrasound. Wendy was and is an awesome mom and partner. And she was really not excited about having to come and get care at the University of Utah and be away from her family. But because she and I developed a good relationship over the course of a couple of visits, we were able to come to an agreement about her coming down to Salt Lake City at about 30 weeks [in her pregnancy]. About a week before her planned delivery, when she turned about 32 and a half weeks, she started bleeding. She was only living about five to 10 minutes from the hospital and was very close, she was living with a relative. From the time that she called me until the time that she got to the emergency room, which was less than 15 minutes. In that time. She had completely soaked I think it was her brother's car in blood and was covered almost from her chin to her ankles in blood. Needless to say this was an accreta emergency.
When you have placenta accreta, the chance of something like that happening to you weighs on your mind every day. And the things that I do as the Director of a placenta accreta program, are to try to make sure that this story doesn't happen. But if it does, that we're ready to take care of it.
I have a lot of pictures to show you. That is really my only disclosure. And then we always have a funding disclosure. The NIH helps to pay for some of my research. But I also want to just mention to folks who may be a little bit squeamish, and that's okay. This presentation contains some graphic images of surgery, pregnancy and bleeding. Not a lot, but I'll try to give you a heads up when we're coming to those. What most people don't find out until faced with it is that accreta is a life threatening problem. And it's one that most OBGYNs don't want to mess with.
My colleagues and partners here at the University of Utah wrote the definitive review article on this for the World's Best New England Journal and stated that accreta is one of the most dangerous conditions associated with pregnancy. It is associated with bleeding and other problems that are truly life threatening. 25 - 85% of patients who have placenta accreta will require a blood transfusion during their delivery. 50% will require a hysterectomy, at least in the United States. And now as I mentioned before, accreta or PAS, placenta accreta spectrum, is the most common reason for hysterectomy at the time of [delivery].
You can also have a bunch of other things like your blood doesn't clot your ureters, that's the tube that carries urine from your kidneys to your bladder, get injured. ICU admission is very common, in some areas it's routine after surgery. If we know about the diagnosis 100% of babies are affected by prematurity, we will get to talking about delivery timing a little bit later. In the most severe cases in the United States, which is, as you know, the wealthiest and most advanced healthcare system in the world in some ways, up to 7% of moms with the worst form of placenta accreta will die. When doctors think about placenta accreta spectrum, they are terrified of it. It's the most dangerous pregnancy complication. Here a study of differing complications was reviewed from the state of California. The smartest pregnancy morbidity related doctors give placenta accreta the highest number of points when giving it a risk score that is higher than other conditions, like pulmonary hypertension and some forms of heart disease that are considered to be reasons to never get pregnant, or conditions that we think of is bad, like HIV AIDS, preeclampsia, hypertension, diabetes, and advanced maternal age. All pale in comparison to the risk that one gets when they're diagnosed with placenta accreta spectrum, it is the most dangerous pregnancy complication.
100% of patients (and thank you to the National Accreta Foundation, I stole this picture from them), 100% of patients who are diagnosed with accreta require an army to keep them safe and take care of them. So here you see a surgical team of multiple surgeons, you see multiple anesthesiologists, a NICU team, a bunch of circulating nurses in scrubs and then there's a whole reservoir of other surgical specialists, maybe interventional radiologist or urologic surgeons also ready in that waiting.
These are cases that hospitals are maximally prepared for, but the morbidity doesn't stop at the time of C section. This study showed that up to 50, or about 50% of patients experienced long term PTSD symptoms. You’d think of that we had another condition that caused 50% of patients to have PTSD we’d be throwing money at it to try to figure out how to make it better for patients.
In our own studies, this was actually a study that I did with a medical student. So go Brian Grover, we found that patients reported long term, painful intercourse, grief and depression and anxiety and worry, though it's accreta patients in red, who have almost double the risk over other patients with complicated cesarean sections in those problems. And those problems persist here in months out to at least two, if not three years. I'm sure that if we asked some patients, it would be even longer. We wanted to know what the lived experience of patients with placenta accreta spectrum was through more than just surveys. And so I had patients who volunteered to talk to our research team to figure out what were the common themes associated with their psychological health, and what experiences they had after a diagnosis of placenta accreta spectrum. What we generally found was that the diagnosis is terrifying. From diagnosis through the pregnancy and birth and into the postpartum period, patients experience emotional distress.
<note that audio was lost of a minute or so during this portion of the presentation, slides were revisited and discussed at the end>
Placenta accreta has exploded, in part because it's more common but in part because we identify it more now. In the 1960s, it was a very rare complication, and today, it's not.
This is my trick slide for all of my learners, the top 10 reasons for the [accreta] epidemic and everybody says, yep, cesarean section. But also, probably the next nine or so are also cesarean sections. We think that the scar tissue that's caused by cesarean section is the foundational thing that leads to most patients having placenta accreta spectrum. Not all, there are some other trends and things like IVF, or other procedures on the uterus that can contribute. And in some patients, there are no risk factors. But we do think that the reason that the incidence is increasing is probably because of [increased] cesarean sections. So cesarean sections are really important. If you're on your fourth cesarean section, your risk of having placenta accreta is 2%. But if you're on your fourth cesarean section and you're unlucky enough to have a placenta attached down low, that's called a previa, then your [accreta] risk skyrockets up to 60%. So remember this slide, when we're talking about risks later, if you've got a placenta accreta, or placenta previa, that's where the placenta sits over the cervix, you have a lot of risk no matter how many C sections you've had. The more you've had, the higher the risk.
Placenta accreta is defined pathologically with a bunch of fancy words that talk about the placental trophoblast attaching to the myometrium, that's the wall of the uterus, with no intervening layer for to help it come off at the time of delivery. But really a practical definition is that it's a placenta that doesn't detach and when you try to forcefully remove it, it will bleed heavily.
Diagnosis before delivery is crucially important. In many, many studies, the risk of high blood loss, the risk of needing a large number of transfusions are all decreased when we know what the diagnosis is before delivery. It's also an opportunity for us to prepare the baby if we know the diagnosis. If we know the diagnosis, we know we're gonna have to deliver early, we can give steroids to help reduce the risk of prematurity. Even if we don't know about it, we still have to deliver about the same gestational age on average because of bleeding or other complications. So getting the pre delivery diagnosis is crucial. But unfortunately, only half of placenta accretas are diagnosed before delivery. And that's from good research that's relatively recent from the UK and the United States and elsewhere around the world.
So if pre delivery diagnosis is critically important, and only half of accreta cases are diagnosed before delivery, how can we improve this as a bunch of people getting together to advocate for accreta? What can we advocates and patients do to help?
Diagnosis depends on a couple of things. The first is awareness of the problem. It's Accreta Awareness Month, as you heard from us earlier, it's critically important that this diagnosis not be underestimated. You can help by spreading the word about accreta in your social circles, on social media, amongst your group of friends, and elsewhere. And I'm thankful to the National Accreta Foundation for being the centerpiece of awareness for this critically difficult problem. So thank you.
It's also important that doctors be more aware of this. There's been a lot of movement in the last decade to increase awareness of how to make this diagnosis, and how to refer patients. One of the things that I've worked on at the Society for Maternal Fetal Medicine is checklists to help doctors make better diagnoses and to know what to do if they make a diagnosis of placenta accreta either right before delivery or during a delivery. On your end, patient awareness and on my end, Doctor awareness and we can work together on both.
Awareness starts for patients at the time of the first cesarean. After you have a cesarean, you're at risk of placenta accreta, but so few patients hear that. Awareness starts when you're considering pregnant, when you’re getting pregnant after having had a cesarean, awareness starts even at the very first ultrasound.
We're beginning to understand through our research that we can make a diagnosis of placenta accreta in the first trimester. And if that's the case, we can sometimes help to reduce the chance of major bleeding, and still preserve the uterus if we know that that is the case. And you can add awareness starts by knowing your risk when you go to see your doctor.
The second big theme is that diagnosis depends on knowing the risks. So who is at risk? Patients who are at the highest risk, which is why they get the largest font on this slide, are those who have multiple cesarean sections in their past and have a placenta previa, which I mentioned before is the placenta sits down low over the cervix, and in the area of the scar.
If you've only had one cesarean but you have a previa, you are still at very high risk. Also, if you've had other types of uterine surgery, and then you have a placenta really anywhere, you are at risk for placenta accreta spectrum. So we think that those who have had a fibroid removal or an ablation, or IVF, treatments even, or other types of procedures that happen in the inside or through the wall of the uterus can cause placenta accreta spectrum.
And finally, don't forget about the last two, which is that if you have had a history of a cesarean and your placenta is low, even if it doesn't form a previa, if it's just low, it can be placenta accreta.
Finally, if there are any suspicious findings on the ultrasound, when you read your ultrasound report, your doctor gets an ultrasound report from back from the radiologists that says, we're worried about how the placenta looks. That is cause for concern.
Now it's outside of the spectrum of this talk to tell you how to make an accreta diagnosis on ultrasound, but know that this is an area of active investigation at our hospital and others. In fact, two of my colleagues from radiology are actually co authors on the international consensus guideline on the diagnosis of this problem. But essentially, we're looking for a placenta that just doesn't quite look right, it's balled up in the lower part of the uterus, it's lower than expected. It's got dark spots in it that you wouldn't expect. It sort of forms little shapes that don't really belong, where they are at. We're going to oftentimes do a trans vaginal ultrasound to look more closely at the area that's likely affected if you've had a low previa or if you have a previa and a prior cesarean. And we may use Doppler flow to sort of show what the vascularity looks like.
None of that is nearly as important though, as you knowing that just having placenta previa is risk. I oftentimes run into cases, either they get referred to us or I hear about them from other doctors where a patient had risk factors, two, three prior C sections or they've had multiple DNCs and underwent IVF. But on the ultrasound that was read at an outside hospital, there was no signs of accreta on ultrasound. The problem with that is that previa is a sign. If you've had a prior C section, and you have a previa, you are at risk and need to have an expert take a look at your placenta.
Third, diagnosis depends on getting a second opinion. Second opinions are recommended. ACOG and all of our major national organizations in a 2018 statement said that it is advisable whenever possible for doctors to refer women with risk factors for accreta to centers with experience. If you have risk factors, it's not a routine ultrasound that you're getting in your second trimester. It is a very detailed, very difficult to perform ultrasound and should be interpreted and read by an expert MFM as well as a radiologist who's used to taking care of placenta accreta.
Second opinions are also recommended internationally. RCOG, which is the Royal College of OBGYN over in the UK, states that when performed by a skilled operator with experience ultrasound imaging is highly accurate and that we should be referring women with any features to a specialist. Accreta is not routine and risk for accreta needs to be taken seriously in a specialty center whenever possible.
The problem is that as recently as a decade ago, less than a quarter of OBGYNs referred women even with known accreta to a specialty center. I have to believe that in the almost 10 years since this study was published that this has improved, but it's also been my experience that we don't get a lot of referrals. We hear about them later, often hear bad stories about them later.
So should you get a second opinion? Here's a slide that Kristen and I were talking about. If you have risk factors, so you've had a prior cesarean, or if you have a previa, consider an expert second opinion. Particularly if you've had a cesarean, and you have a low placenta or a previa. If there's any concerning finding, or any abnormal feature that's listed on the placenta area of your ultrasound diagnosis, it's just worth getting a second opinion to make sure that you don't have this really complicated problem.
If patients have accreta suspected or diagnosed on ultrasound, do you need an expert opinion? Or will your doctor be able to take care of you? Well, I would say you should consider an expert second opinion if your team is not really sure about the diagnosis. That happens, we are often unsure about the diagnosis. I would tell anybody who's seeing me and we're not sure about the diagnosis that it'd be worth considering a second opinion. If it's not evident that a lot of preparation is going into planning for your delivery, you deserve a second opinion. If you've got placenta accreta spectrum, and it doesn't seem like a ton of preparation is happening, you deserve a second opinion. And if it seems like only one person is kind of thinking about you, and you've got a diagnosis of placenta accreta. That's not enough. Get a second opinion.
Consider asking your practitioner, your OB or midwife, “Is my hospital equipped for heavy bleeding?” How often in a year do you see this problem, placenta accreta? Do you typically refer patients for second opinions? What other members of the accreta team will I meet before delivery? And can you show me a copy of the accreta protocol?”
The most advanced centers to take care of this problem are going to have quick, easy, confident answers to all of these. The hospitals that are less busy with accreta are not going to have as good of answers to this.
And so the last thing I'll close with is that the diagnosis depends on experienced teams who are committed to learning and improving in the diagnosis and care of patients. It doesn't make sense that we hear in research studies that ultrasound is highly accurate to make this diagnosis, but also that 50% of placenta accreta is missed until delivery. What makes the difference there is experience. If you see multiple referrals per week for this problem, you are better at making this diagnosis than if you see it twice, or three times a year. If you're wondering or worried about the diagnosis, if they're [your doctor] not sure, get a second opinion.
Accreta diagnosis can [sometimes] be a slam dunk and very easy to make, like it is here. Here's a picture that, upcoming a picture of the uterus inside of somebody's body. So look away if you're a little bit squeamish about that. But you can see here that this placenta is not going to look normal. And indeed, when we got inside, it looked very, not normal. But other patients it can be more subtle.
This was a case before 29 weeks referred to us for concern as she had two prior C sections and a previa and she ended up not having placenta accreta. But to feel confident in that diagnosis it took a lot of expert imaging, we had to weigh what is the chance of accreta. And if we're wrong about the diagnosis, and we missed this one, is it okay for her to deliver in a small town?
So I'm wrapping up now, but I just want to remind you that imaging expertise really matters the most when a diagnostic mistake, especially a missed diagnosis has serious complications. We get together as an accreta treatment team and meet monthly to talk about all of our patients that are referred to us we've got MFM that's maternal fetal medicine doctors, radiologists, Gynecological Oncologists, anesthesiologists, nurse coordinators, research staff, fellows residents, and more who come in, psychologists, come to these conferences. We aim to coordinate and standardize care for our patients and to learn from each other about how to make a better diagnosis and to generate research ideas that are going to change the field to be safer for patients dealing with this problem.
If you go to our [University of Utah] website you're going to see a huge group of people are going to be taking care of you. You want to be at a place where there are many experts who can take care of you.
I'm going to briefly go through this lis, which is the management of PAS. But the reality is that we need more research to understand what the best treatment options are. Most patients in the United States will have a hysterectomy as part of their treatment. But there's remarkable variation among centers and you'll get different advice even from equally smart people working in different areas of the country. But let me remind you the most important part of your treatment plan is whether or not it has expert multidisciplinary care. When you receive expert multidisciplinary care, you will have a better outcome. Research in multiple studies shows that the morbidity associated with your surgery is far less when you get care from a group of people who are committed to team learning and improving their care.
So I want to encourage you to be an advocate for awareness. To people who can advocate in this realm, support PAS research, whether it's answering those surveys that I send you, or advocating for more funding for this terrible problem. And do all you can to prevent [unnecessary] cesareans, especially if there's any doctors on the phone.
I just wanted to close and show you Wendy, I mean, this is when I say the most important part, or the most meaningful part of my work is seeing some sunshine on the other side. I mean it. I've got a drawer full of these cards that I really cherish.
KT:
Dr. Einerson, that was just amazing. Bravo. We cherish you, you are such a gift to the accreta community. Thank you so so much. That was incredible.
I want to pick out my favorite slides, but there are too many. I did love your slide though on the top 10 risk factors for accreta. You got me there. That was a great one.
That presentation was just such a fantastic embodiment of everything that is so important in treating accreta, you just hit all of the values there, including compassionate care. Thank you so much. We're so lucky to have you helping with placenta accreta spectrum.
BE:
Thanks.
KT:
That I do want to say as well, I think we had technical difficulties there for a few slides. I saw in the chat, some folks had audio cut out. And actually I was one of them, too. I saw the slides, but we couldn't hear you. So Joree, do you know which ones they are? Maybe we'll just go through and show those to Dr. Einerson and if he wants to say anything specific about those, we can give them the opportunity to do that.
Joree Novotny:
Yes, thank you, Dr. Einserson. I think folks missed maybe 20 or 30 seconds when you were reviewing some of the results from your study and some of the quotes and comments from your patients. That was the part of the presentation. I know that folks missed out on a little bit. And we actually also had a couple of comments from viewers wishing that they could see more of the results from that study in that survey. So maybe you could answer those questions and share some of those comments with us.
BE:
Sure. Yeah, I can pull up one and I just pull those up and people can sort of read them while we continue to talk but also make some comments about that. So let me pull my slides back up. This is this is the slide that helps to summarize the experiences that were most universal. And the patients that we talked about. Those areas in blue are the ones that the themes that people most frequently stated that some of the examples of emotional distress are here on the screen. And you can see it in these patients’ voices that they were just in fear. And they spent so much time just being lost in that fear. Helplessness is another experience of patients. So here are those quotes. Uncertainty, this is just one quote of many. And in fact, I'd be happy to share the paper once it's published, it's actually in its final stages of being published at the British Medical Journal. So I'd be happy to share that with National Accreta Foundation. Just to get some more idea of what these quotes are like from patients, altered birth experience is something that's really hard for patients. You go into pregnancy expecting to have a certain type of experience, and the doctor tells you that you've got a different experience coming, which can be really difficult and a real sense of loss for these patients.
KT:
Absolutely. So we've talked a lot today about very severe forms of accreta and outcomes. Do you want to maybe touch on the positive outcomes that you see and the influence of high quality of care?
BE:
I think that the reason I hit so much on multidisciplinary care is because this is a problem that really requires the perspective of a bunch of different people to make the diagnosis. Oftentimes, the people, the doctors who are making the diagnosis are not the same ones who are doing the surgery. And they're not the same ones who are looking at the specimen, and they may not be the same ones who are taking care of you postpartum. That coordination is critically important.
I think when we do it the best the patients experience more than just seeing me in the office, they experience care that has experts from multiple different angles. And when we do it the best, I try to communicate with the home doctors that when patients go back home, they've got some understanding of what happened. And they can understand it from the perspective of a doctor, as opposed to just sort of getting it third hand, or hearing only certain parts from the patient’s perspective, which is important. But sometimes doctors just need to use the words that communicate the right information so that you get the best care when you go home.
The vast majority of patients that I've taken care of are going to have a delivery, around 33 to 35 weeks, they're going to deliver a baby that spends some time in the NICU,, but then goes home after a few weeks. They're going to have a manageable amount of blood loss and most of them are not going to end up in the ICU. Some percentage will have complications, that's just part of the surgery. But the average story for patients in our program is that they're going to deliver some time in that window. Their delivery, regardless of how difficult it is, the surgery may take a long time. But most of those patients are going to come on the other side, wake up and find that they didn't have too complicated of a surgical course. So I I tell people, anything can happen. There are some bad things that can happen to you. But the average patient doesn't really, really well.
KT:
Awesome. I'd love to hear about some of your short and long term research goals.
BE:
Sure. In the short term, I want to coordinate studies that happen between accreta centers to deliver research that will give patients better options for treatment and safer care. And this is, as I said before, it's not rare, but it’s uncommon enough that even at the busiest places, we're only going to see 30 - 50 cases per year. To do meaningful research that will change the future for patients in a positive way, we need hundreds or even thousands of patients to participate in studies. And so it is a big short, long, medium and otherwise term goal of mine to get accreta centers to coordinate together to do research to engage patients and studies that are going to make care better. And I tell patients who come to my program if you agree to participate, it's a down payment on the future. You're paying it forward to future mom's, future patients are going to have to deal hopefully with less uncertainty and less potential morbidity than what you had to.
KT:
That's so good.
BE:
I’ve got lots of ideas. But that's the basic gist of it.
KT:
It's so important for women to use their experience towards making experiences better for future moms. And that's something we really believe in here at National Accreta Foundation. I'm going to do a little shout out and a plug for our story bank. All the accreta survivors who are watching with us today, if you have not yet submitted your story to us, please do so. And also keep an eye out, join our mailing list, we do get calls for patient involvement in research, and we need your voices, we need your stories so that we can help Dr. Einerson and all the other accreta experts in making progress towards treating this condition.
BE:
I think right now doctors, not just doctors, health care teams have been so focused and rightfully so on keeping people alive. They haven't quite had the bandwidth to say, let's keep people alive and let's not scare them to death. We're gonna get there. But raising awareness of how serious this is, and how seriously it affects people quality of life, mental health later on, it's critical so that we do better.
KT:
One of the things I'm really passionate about, I've heard stories from different survivors who get treatment all over the country that have these little anecdotes about when my hospital did this, and it was this little thing that was so meaningful to me and influenced my experience so much. And I would love to get to a place where we can share those ideas and kind of crowdsource what the factors are and develop a sort of toolkit or best practices for the patient experience of placenta accreta. I'd love if any of you are watching and have memories of these kind of moments, things that were done at your hospital or by one of your care providers that just made such an impact in your experience, please share it with us.
BE:
That's a great idea. I'd love to see that list.
KT:
We're working on it! So what accreta research aside from your own are you following most closely?
BE:
I'm really interested to see what the anesthesiology community is doing. I think that they're on the forefront of connecting the surgical team to the patient experience. And I think it's their art, there aren’t nearly enough accreta surgeons in the world who are committed to this, but there are even fewer anesthesiologists who really have made this [accreta] their life's passion. And yet the anesthesiologists have a critical role to play in helping patients prepare for surgery. And to be honest with you, I tell patients all the time anesthesiologists are the reason you're alive, not me. So they're a critically important part of this. Everything that anesthesiologists produce, in terms of research, I eat up because I think it's, it's just so mission critical to taking better care of moms and helping moms and families have a better experience with placenta accreta.
I also really follow the conversations around what is placenta accreta? I think that one reason that we don't make this diagnosis very well is because we don't actually understand the disease well enough. There are a lot of physicians all over the world who are doing a better job of classifying this, we're doing a better job of looking at this underneath the microscope and telling us how the placenta behaves and how the uterus can be better prepared so that it doesn't develop placenta accreta. And that stuff is fascinating to me, because ultimately, I want my patients when they give me blood to use for research, I want to have a good enough understanding of placenta accreta 10 years from now where we can take that blood, or five years from now we can take that blood we can develop a blood test so that we're not saying we don't really know this is a 50/50 shot, you've got this diagnosis. I want a blood test and better diagnostics to make sure that people know in advance.
I've seen a lot of comments about people who participate in research. I really really appreciate you guys for doing that.
KT:
That's awesome. Joree, do you want to take a stab at sharing some of the questions that we've received in advance or anything that folks are posing here in the comments as well?
JN:
Absolutely. We have a lot of viewers with questions to inform their current experience and also others in the community. We have a newly diagnosed mom Shelley, who mentioned that her pregnancy has been particularly painful and she's wondering does accreta cause a painful pregnancy?
BE:
That's a great question. I used to just say no to that until I actually started listening to patients. It doesn't make a whole lot of sense that a placenta problem would cause pain. But the more I come to understand this problem, the more I think that it's a uterus problem as much as it is a placenta problem. And I think that uterus’ that are scarred and next to bladders, which are painful, and next to blood vessels, which can be compressed and next to nerves, which perceive pain, there, those are all really good reasons for you to perceive more pain. And I would have to say that even within just the last six or 12 months, I've had multiple patients say, this pregnancy is different in terms of feeling than other pregnancies. And sometimes it's a psychological feeling, but oftentimes, it's a physical pain. So I believe that placenta accreta is a disorder where the uterus slowly starts to open up in patients who have placenta previa and a prior cesarean and then scar tissue, that their C section scar actually opens up slowly during pregnancy. When that happens, I think there can be pain. And so it doesn't surprise me at all that pain can be associated with the process of placenta accreta. And if you've got placenta accreta, you've got risk factors for pain too, more surgeries, more scar tissue, more pain.
JN:
That's really helpful. Thank you. We had someone submit a question in advance about they have heard that previa sometimes, though it can be detected early, it might then migrate and resolve. Would that be possible for placentas that are also affected by accreta?
BE:
That’s a great question. So previa often resolves and maybe in up to 75, or even 90% of cases, depending on how centrally located, the placenta is over the cervix. It's not my experience that accreta moves very much. It's stuck where it implanted for the most part, but I have had patients whose placentas appear to move a little bit away from the cervix itself, but it's still attached to the scar tissue that's causing the problem. And so while placenta previa often moves, I would say that placenta accreta does not. It more rarely moves. And if it moves, it's not going to totally pull away from the area that it's attached to, which is usually down low or a previous cesarean scar.
JN:
We have a mom from England named Charlie who had accreta in a previous pregnancy. She was lucky enough to avoid a hysterectomy at that time. And she's wondering what the risk for her or for patients like her would be of accreta occurring again in a future pregnancy or perhaps at a more severe level, like increta or percreta?
BE:
That's a great question. And I have begun to see on top of the consults that I see for patients who for sure have accreta, I'm starting to see a lot more who had focal accreta, which is sort of a smaller area affected or who had portions of placenta that were just impossible to remove. And they're worried that they may have had accreta. For patients who we know had accreta based on a histological or pathological diagnosis. I think the risk of having it again is about 30 to 50%, although it would be highly individualized based on the location and what treatments you had. Part of the problem is that the treatment for most types, the treatment that spares the uterus is oftentimes letting the placenta either go away, or reset or sort of removing the part that was affected. And when you let a placenta slowly go away, it's still going to leave scar tissue there. So you've still got the risk. And when you remove a big chunk of the uterus to take out the smaller part that was, you know, that was involved with accreta. It's not like you just erase all that scar tissue, it causes new scar tissue when you do a surgery on the uterus. And so I think that patients who have had those treatment options to preserve their uterus, are at ultra high risk, like off the charts compared to those other charts that I showed in terms of risk in the future and for sure they will want to have an expert looking at their placenta starting at first trimester but for sure that 20 week scan.
JN:
I've seen this many times in our support groups as folks are being newly diagnosed and learning about the condition. Christine asks, when it might be necessary for an MRI to be performed as part of the diagnosis. Can you speak to MRIs in the diagnosis of this condition?
BE:
We don't know the optimal role. Kristen, I see your smile.
KT
We have the perfect person here to talk about this.
BE:
I am an MRI skeptic. But that doesn't mean I'm right. You know, I, I'm in the words of Brene Brown, I'm here to get it right not be right. I'm trying to figure out how we can best diagnose this. And in my current understanding of our current technology, MRI can be helpful in some cases, but it's usually not helpful in routine cases. If there is a unclear diagnosis, I would rather have somebody get a second opinion than to just go to MRI because unfortunately, the expertise to read these MRIs is even rarer than to read an ultrasound.
So while I think that there are great centers doing great research to make MRI better, put to better use. I think that the majority of places are still going to do an ultrasound better than they will on an MRI. And so, if your doctor saying we're not really sure, so let's get an MRI. I think that's reasonable, but say, Well, should I get a second opinion or should I go to an accreta specialty center? Instead, I think that would be a reasonable alternative.
That being said, we've run our studies, we don't currently enroll MRI studies anymore, but we have in the past, for some patients who have, including I think some patients on this call, we've done MRIs for very specific reasons because of the [placenta] location. And so this is where the expertise comes back in. It's not that the tool is better. It's that there are experts who understand the diagnosis, and then know which tool is going to work in your specific situation.
KT:
I have a follow up question to Charlie's that I wanted to get in there. Kind of a two part, she brought up the different severity levels of placenta accreta, placenta increta and placenta percreta. There used to be published stats on the incidence proportionally, and I haven't seen that in the past few SMFM updates. I was wondering what your thoughts were on what percentage we're seeing across the different levels of accreta?
BE:
That's a great question. And I'm not sure I'm going to have a satisfactory answer for you. I think our field is moving away from using those three designations. Because it depends on the pathologist to tell us what they see and there's a couple of problems with that. The pathologist isn't the surgical team and the specimen that I sometimes have to nearly wrestle out of a patient's body from scar tissue is oftentimes nothing like what it looked like before delivery. And so we give them a distorted view of what actually existed in the patient's body.
There's also just the disadvantage of when you're not the surgical team, it's difficult to know exactly what the specimen was supposed to look like. So I think there's a move away from that, and towards classifying what the disease looks like inside of a person's body. And so I think in the future, we're going to be describing this the way surgeons do. There was, you know, thinness here and there was vascularity here, and the placenta extended to this area of the pelvis and, and this part of uterus was affected. That's probably why SMFM and others are not focusing so much on it.
But if you take percreta as meaning the most severe type of accreta, both in the past and by whatever new classification system we use in the future, we think it's actually a pretty great minority of cases that are that bad. It's probably been overestimated before to be 20 or 30%. That's because those get flagged, they're no brainers. But the milder cases are often missed misdiagnosed, and I think those are much, much, much more common and probably make up, you know, the accretas, and the milder incretas of the old classification scheme, I think probably make up 90% in the general population of both cases. Thankfully, because the more severe ones are hard.
JN:
Sorry about that. You saw my accreta baby pop in for a second. But it gives me a chance to love a question that I've actually always been curious about ever since I was undiagnosed. I had no risk factors, I was one of those. What I'm told a rare case as it was my first pregnancy. I wonder if you could speak to how frequently that occurs. The OB that consulted on my case suggested it's as little as 1% of all accreta cases.
BE:
I think that's probably right. I think that the majority of patients, like 75% or more, will have classic risk factors of cesarean and low placenta, and then a smaller but still considerable size group are going to have something that can point to in their past gynecologic history that caused scar tissue. Some people that's I had a bunch of procedures that I didn't really understand from in vitro fertilization, or for some patients that I had a septum removed, because I was having difficulty getting pregnant. Other patients might just not know what surgery their doctor performed sadly, on their uterus, and then there's this about probably 1% of all accreta where we can't identify the thing that caused the placenta to do that. And that suggests to me that this is still a diagnosis of mystery, this is still a problem that we don't fully understand. It's possible that, you know, for patients who experienced that there was some events in their life that they don't recall maybe an infection, or a DNC that caused some scar tissue. But for most of the people who come to me and say, I have no risk factors, I believe that they didn't have any risk factors and that’s sort of an opportunity for us to figure out why those cases happen, it might not be the same. It might not be the same cause and there might be multiple causes.
JN:
Thank you. Well, I know we have a lot of new fans of yours in the comments who are asking about your consultation on their cases. They're obviously impressed by your expertise and grateful for the information you've been sharing today.
BE:
Yeah, of course, I see a few other questions, can I keep going? I'm happy to keep talking.
There's one about is the standard ultrasound that you get done done by a specialist. And that really depends on where you live, unfortunately, and you probably don't have any determination, unfortunately, about whether or not that is going to be done, which is why I stress the second opinion. Most ultrasounds that are performed in the United States that are done at 20 weeks are not performed by placenta accreta experts. And that's partly our fault, because we don't train radiologists and MFMs up on this well enough. And we've got to change that in the next decade.
But it's also just the reality that ultrasound has multiple things it's looking at, right, you've got a baby or babies to worry about. So sometimes people can be distracted, but the vast majority of moms will get an ultrasound done at a place that doesn't see more than a couple of accreta cases every couple of years. And so that's why I think it's so critical to take that piece of advice about if they’re not sure about the diagnosis, get a second opinion. If you have the risk factors, but there are no signs, get a second opinion. Because the more places you get an opinion from, the more likely you are to run into somebody who's got some expertise in it. And you can work with your provider to say where if you knew I had accreta, where would you refer me to? I’d feel better about getting imaging done there.
JN:
[We have a question about] whether accreta is hereditary?
BE:
I don't think so. But I don't know that for sure. We don't have enough information. Good question.
JN:
And I know we had a mom asking about bed rest. She's midway through her pregnancy, wondering what she can best do to manage it until she gets to that delivery timeframe.
BE:
I think people are often told to be on bed rest, and it's well meaning advice because this is a scary thing, and you don't want to bleed and doctors and patients alike want to feel like they're doing something to avoid causing a complication. But if you ask me in my heart of hearts, whether or not I think if you do yoga, you're gonna cause bleeding? I don't think so. I think if you were going to bleed on December 23 at 6pm, probably no matter what you did between now and then is going to change that. So I'd love to have a crystal ball to figure out when patients are going to have their first big bleed. Unfortunately, I don't and because none of us do I think the general advice is definitely don't exercise and you should probably be on bed rest. I personally would go psychologically insane if I was on bed rest, which is another reason that I don't generally endorse it. But there's not any research to suggest that if you're on bedrest, you're going to have better outcomes with placenta accreta. I don't think there ever will be. That being said, I tell patients to avoid intercourse. Because there's physical contact during intercourse with the placenta potentially that you don't want to have. And I tell patients to listen to their bodies. If you're having a ton of pain, take it easy. If you're having some spotting, take it a little bit easier. But I've also had patients surprise me and tell me that they're like aggressively downhill biking during their pregnancy or ranching out in the middle of Idaho, riding a horse all day every day for until they're 28 weeks. So keep those examples in mind. Whenever you hear an example about somebody who had a transvaginal ultrasound, and then they bled the next day or somebody who exercised for the first time in their pregnancy and then bled the next day. There's just as many stories of people doing much crazier things and never bleeding at all until their delivery.
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